Isaac's Heart Matters

To Honor our Donor Family

2010-09-02T17:28:00.008-05:00

My apologies again for not posting sooner. For an update on Isaac, he is doing very well now. About two weeks after we were released from Lubbock with no real diagnosis and an antibiotic prescription, he ran out of his regular pediatric drink. So, we had to go and buy some formula to bridge the time while we received his regular milk. We went and bought Isomil Go & Grow for ages 9 - 24 months. For the longest time since he started the diarrhea, I had asked to get his milk changed and his transplant team just didn't think that could be the problem. It was just worrying me because he was stooling 6 to sometimes 8 times a day. I was scared that he would get dehydrated. He was on this new formula for about 4 days and I noticed that the diarrhea was pretty much gone. I was extremely excited because it meant that I was right. Of course, I don't know what exactly in that milk caused his diarrhea but something did. So he was kept on the Isomil powder formula. Because we have to mix it to be 30 calories per ounce, we have been having to buy about 3 cans of formula each week. Whew...a little more expensive than we anticipated. Today, I started him on Pediasure. I'm asking for prayers that this milk works. He has never been on milk-based formula so we're all a little worried. If this milk takes, it will be so much easier than having to buy powder and mix it. We also think that his current formula is making him throw up a lot more. I think that because it is powder, you have to make sure that it settles before it is fed to him. It is more work just to feed him than I'm ready to add. Again, asking for prayers that this new milk works for him and doesn't cause gut problems.

On another note, I have been thinking and thinking about writing our year anniversary letter (a few months late) to our donor family. It really made me want to even more after our friend's little boy Logan had major trouble with his heart failure and finally recieved his life-saving gift this past weekend. We were so relieved and sad at the same moment. Its hard to realize that someone's child had to lose their life to save another, yet they'll never really know how much it changes our lives and how thankful we are. I've been searching online for some inspiration on writing our letter and I found the most beautiful poem about organ donation. I think with the author's permission, I may have to add this to our letter. Isaac and Logan.....THIS IS FOR YOU!!!!

♥In Honor of My Donor Family♥

I received a gift, on a jet it flew
It came from someone I never knew.

It came with no card, ribbon or bows
But sent to me that’s all I know.

It didn’t arrive in a box or sack
And is a gift one would never send back.

The gift in size is rather small
Compared to its power to conquer all.

You’ll never hold this gift in your hand
It’s given to people throughout the land...

This beautiful gift has set me free
What a precious gift and given to me.

This gift was given out of selfless love
And delivered to me with help from above.

These gifts are so priceless, valuable and few
When you know of this gift, you will agree too.

With this gift I can hold my head high
To dream the impossible and reach for the sky.

This gift has taught me to scream and shout
Now let me tell you what this gift is about.

This gift will not be taken in strife
The gift I speak of is that of life.

The gift of life handed me a key
It opened doors and set me free.

Organs aren’t needed at your final destination
Leave them on Earth without hesitation.

Every human will someday be called to come home
Your organs may stay and continue to roam.

No need for organs in the heavens above
Leave them on Earth for others to live & love.

Now that all has been said and done
Please donate your organs and give life to one.

Let’s spread the news let’s scream and shout
Organ donation is what it’s all about
Karol Franks

God Bless You All!

Endoscopy and Colonscopy

2010-07-24T10:48:00.003-05:00

Isaac has undergone a colonoscopy and endoscopy and has been out for an hour. He did well through the procedure and is in his room resting at the moment. We are asking for major prayers right now. When the GI doctor was going through the colon, he found some masses and blister-like pouches. He showed us pictures and said that he's never seen blisters like that before. He took biopsies of the masses that were there and results should hopefully be back by Monday. They have no idea of what it could be but are starting him on an antiobiotic for certain GI viruses called Flagyl. If the diarrhea starts improving, then maybe it was a certain virus causing it. No answers yet, but we are hoping for Monday. There are certain other things it could be but I'm not going to name them and scare people on here. We are already scared as it is and probably making too much of it, but just pray for the best. Sorry the update is so short, but not much more information than this was given to us. God Bless you all!

Admitted to Children's Covenant in Lubbock

2010-07-19T22:01:00.005-05:00

Besides Isaac's ongoing diarrhea (thinking from teething), we thought he was doing pretty well. But of course yesterday, he gave us a scare. When Dad changed his diaper, he noticed a red glob mixed in with his poop. He asked me to look and wanted to get my opinion. I'm no doctor and I said "well, maybe he's just got some irritation from having the runs for so long." Well, it still kinda scared me because the glob was about two inches long and looked like a glob of jelly. I looked it up online and it of course scared me. It came up with a lot of reasons but the worst was called intussusception, and it absolutely scared us of course. Ernest called the On-call cardiologist and told him the situation. He asked us to go to the nearest hospital and get it checked out. Well, with the experiences we've had with our local hospital, we didn't want to take the chance and take him there. We told him that the closest children's hospital was located 2 hours away and that we would rather take him there. So thinking that maybe they would just test and discharge him on the same day, we left as early as we could. We ended up leaving by noon and got to the children's emergency at 2pm. Bloodwork, xrays, and cultures were done very quickly, thankfully because I guess Isaac was in the right mood to cooperate. All the primary results came back negative but they wanted to go ahead and admit him for more tests and monitoring. Let me say, that even though we hated to stay overnight, the children's floors are so cute and pretty. The only complaint that we had was that there is only room for one person to sleep on the sleeper couch. We tried to make ourselves fit on the couch for a nap, but it just did NOT work out. Ernest went to go buy an air up mattress. So besides the nurses coming in through the night, we slept well. Doctors came in to see him this morning and talked to us. They told us that although he is stooling blood, they didn't think it was intussusception but they wanted to do an ultrasound to make sure. The doctors here think that maybe the immunosuppressants that he is on are the culprits. Ultrasound was done and radiologist didn't see anything to worry about. We were waiting for doctors to come by this afternoon, but I guess we'll have to wait again till morning. I'm praying that maybe they'll just end up making changes to his medicine or giving him something to coat his intestines and get us going home by tomorrow evening. We really need to get home because my Mom is at home alone with Eli and my niece. My niece is 12 years old and her and Eli are a big help with her. My aunt goes to check on her periodically and stayed with her overnight but I hate to burden them. Please send your good thoughts our way. I will keep everyone posted.

Setting aside all of this weekend's drama, we had a great time last weekend. Our friend, Melody, her two nieces, nephew and mom visited us for a few days. We did all there was to do in Midland. We went shopping, out to eat, went to the drivin and best of all went swimming. This was Isaac's first time in the water and although the initial cold shock scared him he ended up loving it. Here are some recent pictures.

Still in Houston

2010-07-06T09:20:00.003-05:00

So, we were a day from going back to Midland and then something awful happened....after we ate dinner Friday night at Fuddrucker's, my mom came out of the restaurant, tried to step off of the sidewalk, slipped in the mud and broke her leg. Fuddrucker's immediately called the ambulance and they were there within minutes. I guess because Mom has no medical insurance, she was taken to Ben Taub trauma center. Although I can't complain too much about the doctors, the hospital is horrible. She is in a room with 3 other people and the lady next door is being watched because they are suspecting that drugs are in play. Surgery was done two days ago and now all they are keeping her in the hospital for is pain management and physical therapy. She hasn't had to to take much for pain and physical therapy is trying to see if she'll do well with a walker...which she's been doing pretty good. Now, we are just waiting for them to release her so we can get back home and get her into some kind of program for her medical care. She has also been diagnosed with Type 2 Diabetes. I kind of always suspected it, but she has never been one to go to the doctor and get it checked. I guess we're all just a little glad this happened when it did, because it could've only gotten worse as time went on. So now, we have to worry about her health and make sure that she IS taking care of herself. She has to be out of work for at least 3 months while her leg heals. Once I get back home, I've got to find a part time job to be able to pay for these extra medical bills and her monthly financials. So, I would never really do this...but I am desperate. Does anyone know of anywhere (besides fastfood) that is hiring for evening help? Any thoughts or suggestions...please email me at elisaac2629@gmail.com. I am finally able to start online classes tomorrow and am so excited. It shouldn't take long to get this Medical Transcription degree (hopefully in a year) to get a job in the medical field. That is in the works right now too. I'm sure we'll be able to handle all these extra situations...its just that the future of things seems a little foggy at the moment. The Good Lord obviously knows we can handle some challenges and I'm sure we can this time too. Please pray for us...but especially for my Mom's strength. God Bless you all!

Heart Cath Biopsy

2010-06-29T11:33:00.004-05:00

HE IS OUT ALREADY
Isaac is out of the procedure and his doctor says he did really well...no complications. We will not know the results of his biopsy until tomorrow. I'll keep everyone posted. We are still waiting to see him in recovery. They tell us that it will be a 6 hour recovery period. Pray for our sanity! ;)

UPDATE 2
We got an update about an hour ago and they said they had already gotten an IV and an arterial line in and were just waiting to start the procedure.

UPDATE 1
Isaac was finally taken back at 12:45 and they will try to update every hour.

At this moment, we are sitting in the surgery holding area waiting for them to take him back. The nurses are waiting for his bloodwork to come back first. He has had diarrhea for a couple of weeks now because we believe he is teething. They want to see normal electrolytes before they take him back for the procedure. I'll update once something is known. God Bless!

Its Been Way Toooooo Long!

2010-06-24T00:08:00.013-05:00

Whew, 6 months without an update is just too long! We’ve just been too busy enjoying our time as a family at home. Since the last procedure that was done to fix his bleeding issue, his cardiology team had us stay in the Houston area for three months to ensure he didn’t bleed again. He did bleed a few times but the amounts were small and didn’t make too much difference in his hemoglobin level, so he was left alone. While we were there, I also had to have emergency surgery to remove my gallbladder (thank goodness we weren’t in Midland for that!). We were finally released to come back home in Mid-March. Since then, we’ve just been trying to get things back to normal again…whatever that is, right!? His birthday was on February 26th and was spent in Houston, but when we got home, we had a huge party for him. The party was a combination birthday and Baptism party. We had an awesome time with family and he received many gifts.

I would like to say that we didn’t have to get hospitalized again, but I would be lying. When we went for his scheduled clinic back in April, we had to get his immunosuppressant refilled in Houston before we left. In case this turns into a lawsuit, I won’t name the certain pharmacy that is involved. Because the immunosuppressant level was lower than usual, the dosage was changed but we were released to go back to Midland. The only lab that can get his level checked in one day is Covenant hospital in Lubbock. Since his dose was changed, we were asked to go to Lubbock and get it checked in a couple of days. A few days later, we went and got it checked and the level was even lower than before. His dosage was changed again and we were back in Lubbock a couple of days later. He was checked yet again, but this time his level was undetectable. The cardiology team wanted us to get him directly to Houston to get him admitted. Because Isaac wasn’t showing any visible signs of sickness or rejection, we were allowed to drive rather than to get him airlifted. While on our long drive there, our transplant coordinator called and informed us that the pharmacy had messed up his medicine. She read the exact recipe and noticed that instead of mixing with 0.3 mg, they mixed it with 0.03 mg. He was basically getting none of the medicine at all! So, we drove for almost 10 hours straight and Eli wanted to stay in Midland. When we got to Houston (at about midnight), we were admitted directly into a room and blood work was done again. They also wanted an echochardiogram done immediately, so needless to say, we were up till the wee hours of the morning. A few hours of sleep later, we were told that his echo and other than his prograf level, everything was normal. All they wanted to do was keep him in the hospital until his level was regulated (which was only through the weekend). We were discharged that following Monday, but stayed around the area to get his levels rechecked to make sure they were going in the right direction..which they were. So hopefully this pharmacy will compensate us for that unnecessary trip. So, besides trying to get him to develop a little faster, everything is great. He still cannot sit up on his own, but we are constantly working with him every day. He is doing better!! We are also trying to get him to talk, but nothing yet…just a lot of yelling at us! He does great mimicking though…I wish I could capture pictures of those spontaneous moments, but they just happen so quickly.

We have got a scheduled trip to Houston coming up on the 29th to get a biopsy done on Isaac. Although, he has been under many times already, we’re still a little nervous, because it still has it’s risks, but I’ll be posting as we get new information and the day of the procedure. Stay tuned!

We are also kicking ourselves because we forgot to celebrate an important milestone for Isaac! June 6th marked the 1 year anniversary for his heart transplant! I just can’t believe it flew by our heads. Now, its time to think about what we are going to say in our letter to the donor family. To me, that’s not just something I can write in one day, let alone even a week or a month. We really have to think about what how we want to show our gratitude in words. That is hard!! But it will get done.

Other than that, there is really nothing else interesting going on. Only that I have decided to go back to school to get my associates in Medical Transcription. This will only be a stepping stone to what I really want to get into, but it is a good start. I hope to work my way up to a masters in Biotechnology, but we’ll have to see how that all works out. I never realized my calling until we went through this ordeal with Isaac. I've always been interested in the medical field but never wanted to be a doctor due to the attachment that I have towards people. I was always fascinated by diseases and how they were caused and such. I guess I never realized the extent of the medical field. Hopefully, I can get this degree in less than a year to be able to get a job quickly. What’s really nice about this career, is the option to be able to work from home (of course not promised). I would really like to take a moment to thank the Carl McCain Foundation. This wonderful foundation has tremendously helped with all of our medical bills and every trip taken for medical reasons. If it wasn’t for them, I really don’t know how we would be where we are right now. So, again….THANK YOU AND GOD BLESS YOU ALL! I’ve been able to stay at home to take care of Isaac, but now, time and money is getting short and I need to get a job. Thing is…I’ll probably have to get a night job, because I’ll have no one to babysit Isaac during the day. My mom is able to watch him, but she’s got her hands full with my other nieces, nephews, and cousins, so I don’t want to push another burden on her. I really wish there was a legitimate company that would let me work from home..like data entry and such. Anyone know of any??? Haha..its a long shot!!! So, to finally put an end to this message, I’ve made a small slideshow of some of the pictures we’ve taken since I last posted. I’ll promise to keep posting a little more often! God Bless You all!

Practicing sitting up!

Big brother is helping to teach Isaac how to eat.

Cutie!

Eli finished his first puzzle on his own!

Brothers Forever!

They call me the Fireman!

Yeah, that's my name!!

Pretty as a flower!

Family with Ronald McDonald.

Before our Blue Bell Creamery tour!

Bathtime!

Acting like he knows how to drink from a bottle!

Birthday Boy!

Presents!

Baptism Cake

Long Day!

Pooped!

Tired!

Baptism Outfit

No more pictures please!

Trying out big boy car seats. I think he likes this one!

My first photo on Dad's new phone!

Eli is ready for school! Oh wait, looks like he's got a stowaway!!

Look at those lashes!

1st Birthday at RMH

First two teeth

Learning how to play Nintendo early!

Waiting for the New Year

2009-12-29T12:11:00.006-06:00

And what a year it's been...is there any way to shred up the sad and scary parts? I can't wait to start fresh. It's is even greater news that if Isaac keeps doing well, we'll hopefully be out of here by the first week of the New Year! By the way, he did great through his last procedure and came out looking like he didn't have anything done at all. Since the procedure took a good 6 hours, they left him intubated that night and let him rest through the night. Ernest had left that same morning to go get Eli and my mom from our halfway point and when I arrived in his room at the hospital, I almost cried. He was happy, energetic, and already breathing slower than he was normally breathing. Since then, he has had no more episodes of coughing up blood or better yet even coughing. Although, one lung is useless, please pray that this did the trick. I don't want him to go through another surgery just yet. A couple of nights ago, Isaac spiked a fever at about 3 am. They drew all kinds of cultures to see if it was a possible bacterial infection. Ernest and I already knew that the PICC line that he still has was probably the culprit. They started him on antibiotics yesterday and today we found out that it is most likely from the PICC line. Since then, it has come out and he now has a PIV on his foot. Now it really is a question as to how much longer we'll be in the hospital. It could be the first week of the New Year unless Isaac acts up in any way again. We have also been warned that after we get discharged from the hospital, that we will have to stay locally for a month or two more. It really depends on how Isaac does during those months. So, for now....still waiting!
No words can express the gratitude of our wonderful friends and family, especially EOG. Its truly amazing how fast EOG reacted and helped with the costs and food for my mother-in-law's funeral. It was something totally not expected and were not prepared for. I don't know how we could have gotten it done without you. You made it possible to forget all the financial worries and just get it done. Clarissia, we would also like this opportunity to thank you, your family and anyone else that made Eli's Christmas so great. Let me tell you....that kid got spoiled! He received all of his Christmas list AND MORE! We were all able to spend it together at the hospital. Despite the small hospital room, it really was more than we could've asked for. It looks like we'll be ringing in the New Year in much the same way. We also want to thank the people that do not know us yet willingly give what they have to help. Sharon, thank you so much for those goodies that you brought to our hospital room. The hosital food and restaurants around the med center are getting a little monotonous! We love each and everyone that has helped us in any way (even by just talking and visiting) and greatly appreciate EVERYTHING!!! With that said, let's put all our worries behind us and get ready for this BLESSED NEW YEAR!!!!! God Bless You all!

Happy New Year Glitter Pictures

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Update 1

2009-12-22T17:00:00.002-06:00

We have finally received an update...they have successfully occluded one of the arteries that could be a culprit. They are going to take more pictures and if they see anymore it'll take a little longer but if not then he'll be out and ready to be seen.

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Crossing Our Fingers

2009-12-22T13:50:00.004-06:00

Today is another big day. Isaac is back in an interventional catheter to hopefully fix his problem. His cath doctor is doing this together with an interventional radiographer because it'll show the smaller veins and arteries a whole lot better. His cath doctor has spoken with the cardiology team and with the radiologist and who know whom else to get all their opinions on what their plan was. So what they told us was that they were going to see if they could plug any abnormal arteries that they saw. We're crossing our fingers that after this, he may not bleed anymore and his respiratory rate might be a little lower. All of the docs have said that there are no guarantees that he won't bleed again, but that is why he is keeping us locally for awhile. So, I'll update more when we get more info on how it's coming along.

In the meantime, we are staying at the Ronald McDonald House that is located a few blocks away. It is such a blessing to have a place like this. This place has everything we need that we would have at home. They provide a family pantry, and family fridge and so forth. We also have an alotted pantry and refrigerator space for groceries that we want to get. Plus, lunch and dinners are donated pretty much everyday. This is probably the busiest season too! Yesterday was an exciting day...the Houston Rockets came and brought presents and took pictures with the patients and families. They gave us a present and a Houston Rockets onesie for Isaac and I was also able to get a Houston Rockets basketball for Eli. I'll post the pictures as soon as I get them. If all things go well, Eli is scheduled to come tomorrow with a generous co-worker who offered his time to take Eli and my mother halfway to Houston. Ernest will be driving the other half. We thought that this Christmas might be horrible with the flu quarantine and all, but we just found out today that Eli will be able to visit his brother in his room (whichever room it may be). When we've been here these past months, Eli was not allowed in the patient room to see his brother because of flu season. Siblings were allowed in the hospital but not in the patient rooms. I'm so happy that they were nice enough to allow him visitations. We're happy, excited but stressed at the same time. I hope everyone is enjoying their holiday! Love you all! Now here are a few pictures for you to enjoy....

This one was taken shortly after extubation a few days ago.

This is Isaac resting yesterday....

And this is the cute ornament with his name at the Ronald McDonald House.

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He is out!

2009-12-17T13:26:00.002-06:00

Isaac is out of his procedure and still stable. His cath doctor came to speak to us and told us basically what we already knew. He said that he could not get into the veins to open and stent them because they were too long, narrow and almost completely blocked. He said that pressures were taken and that everything is still well and his left lung is already doing all the work and taking in all the blood flow just fine. He did give us a breath of fresh air when he told us that there are kids with almost exactly the same thing and because that diseased lung is not giving them problems, then they just leave it alone. But, because Isaac is bleeding, they feel it is time to do something about it, but all of the team will have to talk about it tomorrow morning. The two options that were talked about was either plugging the right pulmonary artery or to go ahead and remove that whole right lung. I have been reading many articles on living with one lung and it is very possible. Just like we only need one kidney, we would only need one lung, but what scares us is the whole surgery and recovery thing. The option of plugging the pulmonary artery has not been studied extensively, but is still something that they want to consider. I would like it considered also if it means it could work and no surgery (for awhile at least). His cath doctor thinks it COULD work with minimal problems. The risks with this is of course infection in that unusable lung, more bleeding, etc.......but he still thinks it could be worth a try because its not really invasive.

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UPdate

2009-12-17T11:32:00.000-06:00

It took longer than Normal because of artery access but they were able to get in. One of the main arteries in the groin was totally blocked and inaccessible and the other artery was blocked but still accessible. So they are in the process of placing stents in there so that it stays open. They were unfortunately unable to do anything about the lung problem, so we have yet to speak with the doctors about our next option. If no other problems exist then it looks as of that lung will have to be removed. They were also able to go ahead and perform a biopsy of his heart muscle. This is done for all transplanted kids to check for rejection. He was not scheduled for one untill next year but I thought it would be a good idea to go ahead and get it done. This is all the info I have for now.

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A Big Day!

2009-12-17T08:13:00.002-06:00

So today, he is in the cath lab and they just took him back about 10 minutes ago. What they are trying to do today is to go and see if they can unblock and stent his right pulmonary veins. This cath will also give them more information as to if anything else is going on (with his heart, his other lung, etc) which hopefully all is okay. Please pray for my son and for the doctors that are caring for him right now. I'll keep updating as I receive updates. God Bless you all!

glitter-graphics.com

When it Rains it Pours!!!!

2009-12-14T18:12:00.002-06:00

We thought the hardest part was over.......

Our hearts have just been chewed up, spit out and stepped on....so let me explain.

From the last time that I posted, we had been released to go home (Midland) after Isaac's last bleeding episode thinking that it would not happen again because we were given medicine to cure the probable ulcer somewhere in his GI tract. Well, like I said, "when it rains, it pours." On our way back home from Houston, Ernest found out that his mother passed away from a heart attack. The heart attack came from her having a UTI, then it got to her kidneys and finally her blood got infected. When the blood becomes infected, the blood is poisoned and starts building plaque and affecting other organs. Well, this is what happened and she passed so unexpectedly. To make a long story short, we had many people visiting and the funeral service was scheduled for Saturday. Saturday, Ernest was out running last minute errands and I was home with the kids and starting to get ready when I heard Isaac coughing on his monitor. I immediately went to go pick him up and knew what was about to happen...he started coughing up blood again. I called 911, they picked us up within minutes and headed to the hospital. Ernest showed up a few minutes later and we were told they were getting paperwork ready to airlift him. Ernest got to Houston with Isaac at about noon and I caught a plane at 4:10pm and got there an hour later. While in the emergency room, the doctors said that it was in Isaac's best interest to be intubated. So when I arrived, it was hard to see my son with a breathing tube in his mouth. We all knew that it WAS in his best interest and dealt as best as we could. That night, he was kept sedated and comfortable so as to keep him from pulling out the tube. We were called in the next morning because they decided to gett the scopes going to see what was going on once and for all. The procedure took all but 30 mins and when the doctor came to speak to us, he said that the area of bleed that he saw was most likely the culprit. He said that he could not see the details and extent of it, but that the bleeding was coming from the left upper lobe of his lung. So then, that day was pretty much the same as the last with keeping him comfortable and sedated, but they told us that the next step would be to schedule a CT angiogram and get a long-term picc line in place at the same time. He was taken in today at about 1pm for both procedures and it didn't take long for those also. The hard part was waiting for the results of the CT. This is where it gets complicated..
We were told that the scan did give them the information that they were looking for. What they saw was that the artery that leads from his left lung to the heart was extrmemely long, narrow and blocked. From this information, their next step is to do a heart catheter to get even more data on how to fix it. Since the problematic area is almost impossible to fix, if they cannot figure out how to repair it during the cath, a few more options will have to be thrown on the table. Three considerations are to remove part of that lung that is affected, remove that whole lung, or even a whole lung transplant. Family and friends keep asking us what we need and how we are feeling. We're almost speechless and don't know what to think anymore. All we can ask for is prayers. Pray that maybe they can figure out a way to fix this with a minimally invasive procedure. Pray that the doctors can make the almost impossible, possible. Pray that Isaac stays strong throught this whole matter. Pray that whatever doctors decide to do, is the right choice. Pray for the family and friends that we hold dear to our hearts. Pray for our family's faith and strength, and most of all please pray that we are able to keep the faith. God Bless you all and I will keep updating as I get more information.

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No Significant News

2009-12-02T19:08:00.002-06:00

No new news, but also no bad news yet. We waited all day to see the ENT (ear, nose, and throat) doctor and he finally just showed up. He came in and stuck a camera scope through his nose. He found nothing considerable in his nose or throat that was actively or could have caused the bleeding. At this point, his cardiologist aren't too worried anymore unless it happens again. They are telling us that they are just being watchful of him right now. The combination of blood thinners was likely most of the cause of so much bleeding, but still don't know where it came from. I guess as long as it doesn't happen again, it really shouldn't bother us too much. I trust the doctors here...they know what they're doing. Otherwise, Isaac is doing wonderfully...playing, giggling, smiling. He is such a liar right?

Update after Procedure

2009-12-01T17:31:00.002-06:00

Isaac is out of his procedure and we are waiting to see him in a few minutes. What the GI doctors found really couldn't determine that the fresh blood came from his stomach. They found a few scratches inside his stomach but the doctor didn't think the bleeding came from them. Now we're back to the guessing game. I'll update with anything else that we find out. Thanks everyone.

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Back to Houston

2009-12-01T14:07:00.005-06:00

We are once again back in Houston. It all started on Friday morning after we got back from Black Friday Christmas shopping. We were so excited...this being Isaac's first Christmas and our first Christmas all together. Not that we haven't been together for Christmas, but there was always doubt somewhere in the back of my mind. As much faith as someone can have, who wouldn't have that doubt. So anyways, we got back and Isaac's medicine and breakfast was due when we heard him trying to cough something out on his baby monitor. He kept coughing and coughing like he couldn't clear what was there. So Ernest went to go pick him up, brought him over to where we were and patted his back to help him get the stuff out. We thought that maybe it was just some bad congestion built up while he was sleeping, but when he started coughing it up, it came out red. Oh my gosh....we've never been that scared in our lives. It took me a matter of seconds to grab the phone and call 911 and of course you feel like they take forever to get there, but in reality it probably took them about 2 minutes max. So they took him to Midland Memorial where they asked us a series of questions, drew blood, gave him a breathing treatment, and stuck him for an IV. The doctor is telling us that it could be a number of things causing it, but otherwise he is stable and comfortable. He wasn't crying too much..only when they were poking him. At this point we have already been calling the doctors at Texas Children's trying to let them know and we already know that we are headed to Houston again. I immediately headed home to start packing, and within a matter of a couple of hours, we were headed out the door. Ernest left on the jet with him at almost the same time we left by car. Ernest got to Houston an hour and a half later and we finally got there at 8 pm. There were still no answers when we got there, but they did have an idea that the blood probably came from an ulcer in his stomach. He was put straight into a private room with only a pulse ox monitor. After that episode, he seemed happy and was his normal self for most of the time. So, what they said was that they were not 100% sure but that a combination of his two blood thinners (Lovenox and aspirin) caused ulcers in his stomach that started actively bleeding. The only way to check him for active bleeding was for them to do an endoscopy. Since he seemed to be doing fine, the doctors didn't want to put him in any risk with an endoscopy so we were going to be released some time today. So this morning after getting his blood drawn for morning labs, he started coughing. I got up to pat his back and lean him to the side and he started coughing up blood again. This time it didn't seem to be as much but they ordered for them to also get a syringe and see if he had any blood in his stomach through his g-tube. The nurse got some sterile water, pumped it in and pulled it back out slowly and pulled back a lot of fresh blood. This all happened while doctors were doing their morning rounds, so they were just around the hallway. They checked his vitals, checked his heart, and other than him aspirating a little, he was fine. The cardiologist had a talk with the GI doctors and want him scheduled for an endoscopy as soon as possible. He was put on standby but written in for today so here we are. We are hoping that this test will confirm that the bleeding is coming from his stomach and no where else. If they do find bleeding in his stomach, the doctors will go ahead and repair it, but if they find that it is an infection or something else medicine can handle, than they won't do any further intervention and start him on medications. If it is not blood coming from his stomach, then it could be coming somewhere from his ears, mouth, throat, etc, but we are hoping it is his stomach. Please pray that they find the cause and can fix it pretty quickly.
With all of this happening, Isaac is still in good spirits and playing as much as he can. I think we'll go and buy him a "get well soon" balloon that he can knock around after he gets out. He'll have something else to play with besides his mickey mouse beanie that he loves so much. Its so cute to watch him wrestle it sometimes. Most of the time, just putting mickey's ears next to his mouth will make him fall asleep faster. I never thought one of my kids would have a security item. Needless to say, we've stocked up with 2 more mickey mouse replacements. ;-) I'll update once he is out. We may not have any news on what it is yet, but at least he'll be out of anesthesia. God Bless all of you who think of him often. We love all of you.

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Happy Halloween

2009-11-01T21:31:00.003-06:00

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Quick Trip to Houston

2009-10-29T11:20:00.006-05:00

So, for those that didn't know...we decided to take a quick weekend vacation to Houston!!! Hahaha...not really...its really not something to laugh about but a regular pediatric appointment turned from getting admitted into the local hospital to getting airlifted to Houston. We had already known that Isaac was sick with a probable virus and I guess we got him to his doctor in time before he could've gotten worse. It all started the day that we came back from Houston for his monthly checkup (which went great with no changes by the way)and I started running fever and having aches all over. We finally got home and I was finally able to get some rest thinking that it was probably another one of my chronic sinus infections. I kept the fever at bay with Tylenol and Ibuprofen for the night and next day, but when Ernest woke up feeling awful the next day also, he made a doc appointment for both of us. I went first, got tested for the flu and it came out positive. I went home terrified and told Ernest we needed to call his pediatrician, his transplant coordinator, and his heart transplant doctors to ask what measures to take. So, Ernest went and was flu positive, and so he also asked about bringing in Eli. They told him that they'd test him and if he was fine, that they'd go ahead and administer the flu shot. ...turned out he had the flu also. All of us were put on Tamiflu with lots of rest and fluids. My mom was thankfully able to help out with most of Isaac's care to lessen any exposure to the flu. That night, Isaac started not wanting to sleep through the night with coughing and a low grade fever. We thought of one of our worst fears...he has the flu. Many calls were made to Houston and it was decided that we should just take him to the minor ER to do a whole fever workup on him. We didn't have to wait too long for the results, but he came out negative for flu, but the doctor said it was probably a minor virus and gave us antibiotics to prevent viral pneumonia. When we finally went home, we took all necessary precautions to keep Isaac from getting the flu, so we wore plenty of gloves, masks, and had to lessen the contact with Isaac. Well, last Wednesday night, he coughs sounded more congested and we were getting worried that his cold was not subsiding. I was glad that he was scheduled for his bi-weekly appointment with his pediatrician here. I woke up bright and early the next morning and had Isaac at his appointment at 8:30. His doctor checked him out, listened to his heart, and tested him for the flu. After asking me a few more questions, he looked at the test strip and said "he is flu A postive with a possible ear infection." I told him, "so okay, where do we go from here?" He tells me that if it was his son in the same situation, he would call his primary doctors and let them know, but in the meantime get him admitted into the hospital. It wasn't because of the flu, but because he had the flu with a bacterial infection on top of it. Isaac didn't look even all that bad..it was just the congested cough that scared us all. So after he gave me the papers to get him admitted, we headed to the hospital and called Dad to tell him the news and get him to call his Houston doctors. Isaac was admitted, undressed, hospital-gowned, poked for an IV, and then got a breathing treatment and a dose of Tamiflu. During that time, Ernest had spoken with his doctors and found out that Isaac had to be airlifted to Texas children's. The Kangaroo Crew showed up at about 4pm and Isaac and I were driven to the airport. This is the plane that got us there.

Here was the Kangaroo Crew getting Isaac ready for transport

And here he was on a big man stretcher trying to look out the window.

So we got to the hospital at 5:30pm and the only room they could get him into was in the PICU. Doctors said that it was overkill but because there were no step down private rooms open, they still wanted him hooked up to monitors for precautionary measures. He stayed in the PICU overnight, had his regular meds plus Tamiflu (no sedatives...surprisingly) and got his well-needed rest. I waited for Ernest to get in and he finally got in at 12:30am. We said our good nights and gave him many kisses and headed off to get some rest at the apartment. We knew he was in good hands because all the nurses around him just wanted to play with him and make him smile. We came in the next morning to find him in a Step-down private room (much less critical). After the doctors rounded that day, they said they wanted to just keep him for observation overnight and that we would see where that took us for the next day. It was also said that he looked surprisingly well for having the flu. Becuase they've already seen too many cases of the H1n1, they were treating him as if he had it too. Any doctor or nurse that came in the room had to wear gloves, masks, and a sterile smock to protect all the other patients that they come in contact with. Really...you would've thought (by the looks) that he had Leprosy!!! So anyways, the next morning rounds, we were told that we were no longer needing to be in the hospital because it was probably more risk of him getting another virus. But...being the question-askers that we are, we asked the doctor if it was easier to get a swallow study done inpatient rather than outpatient. We had been trying to get him scheduled for two months now to no avail. So he said that if he could get one scheduled for Monday morning, that he would keep him there until then, but that if they couldn't they would talk about releasing us that day or the next. Later that day, we were finally told that he was scheduled for his swallow study on Monday morning...so we stayed until then. Its a little difficult to keep our sanity together while being locked up in an isolation room with nothing to do but watch TV or eat. We were thankful to have Tia Sylvia there to keep us company for the weekend. It was also great to have some friends visit us while we were there. So finally Monday came along and Isaac had his swallow study done. He passed with flying colors and is now able to take any liquids by mouth. Isaac is now eating 4 ozs of baby food per day (quite a bit), and we have tried a few times to get him to take a bottle. He doesn't take to it too well...we may just have to go straight to a sippy cup. We don't want to force it on him because then he'll only remember eating as something bad. He was finally released on Tuesday morning but we weren't actually discharged unitl about 1pm. so, we weren't able to leave town until 2pm. We left the hospital very excited but with heavy hearts because we had also just found out that a heart child (whose parents we spoke to) had passed away a few weeks ago. I'm not too sure of the major details of how but we did know that she was very sick. She was admitted about the same time Isaac was born because she was Post Heart Transplant and she was sick. They found out that she had contracted a virus that scarred her heart and to top it all off, she was also in rejection. Rejection is an almost normal think to go through after transplant, but having a virus that killed some cells of her heart was what was making her sick. She was in ICU for testing for the whole time that we were there also and her parents were told that she would have to have a retransplant. But...she couldn't be listed until all infection was gone. It seemed that she just kept getting sicker and sicker and so they finally said that a Berlin Heart was the only option to bridge her to retransplant. She was able to get her Berlin about a month before Isaac recieved his heart and seemed to be doing well. Ernest and I had spoken with her parents many times and they were very nice folks. I can only imagaine what they are going through at this time. The reason I bring this up is because I'd like my friends and family to keep this family in their prayers. This little girl's strength and power were unforgettable to all of us. Please pray that God with bring them comfort and strenth during this time of bereavement. Thank you all for listening and God Bless!

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A Quick Trip

2009-10-28T17:19:00.000-05:00

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HOME SWEET HOME!!!!

2009-09-24T16:31:00.003-05:00

Nothing feels better than being at home. Although most of our time has been spent unpacking and cleaning, it has been wonderful! Our journey back home was a long and tedious one. The trip was going by pretty fast until a downpour caught us right before getting to Ozona. We had our van and a rented pickup truck packed (no tarp!), so my recliner and a few boxes got soaked! I was infuriated..but not for long! I think God apologized...about an hour before getting home we saw a beautiful full rainbow and another half one right next to it. I was able to take a few pictures, but the second rainbow didn't come out too dark.

There was also a beautiful sunset that welcomed us home!

Isaac is still doing very well...thankfully he hasn't caught any other bugs since we've been home. He had his first appointment with his pediatrician here and his drug levels still have to be checked every two weeks for awhile. We have been set up with ECI to continue working on physical therapy, occupational therapy, and speech. Today was his first evaluation and then we need to set up his evaluation with each therapist to see what he needs as far as any type of therapy. We are also still continually working on his feeding (mostly baby food). Because he has not had his swallow study done yet, we are still hesitant to try bottles on him. We have though, don't get me wrong. His formula has to be thickened (pretty thick) so it is even harder for him to try to suck, swallow, and breath. He hasn't completely learned how to roll over on his own either...I think it'll take a little more time. He also does not do too much cooing yet...unless he accidentally surprises himself. We've been trying so hard to make him start laughing too. I've heard him a few times...its a short laugh..but so cute! We'll get there! People have to understand that because he was intubated for so long that it is almost like he is 4 months old rather than almost 7 months old. Our next trip to Houston is on October 8th. Since transplant clinics are on Thursdays, we have to leave on Wenesday...looong trip. We also have to figure out a way to get the rest of our stuff back home. So nothing much else except for loving the home environment. We are home, both kids are here, and the weather is wonderful. I've grown to really love the coolness and will not ever take it for granted. Bye for now and thank you everyone again for your constant thoughts and prayers.

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Happy Labor Day

2009-09-07T23:34:00.005-05:00

And what a Happy Labor Day it is.....the day before we go back home to Midland. We had been released since this past Thursday but more drug levels had to be checked this past Sunday. Not much else has changed with Isaac except that he's growing and being a cute baby. We're all packed and ready to go...so excited that I couldn't remember what else I was gonna post. Just wanted to let everyone know that we have finally been released and are headed for home tomorrow (Tuesday 9-8-09). What a day to remember...the first time Isaac will see his real home!!! God Bless all that pray for us and especially Isaac. We wouldn't be where we are now if it wasn't for the family and friends that have supported us throughout this journey. Please stay tuned and watch for other pictures and updates (although probably not so often as I had done before)...Again, hope everyone had a great Labor Day...I know we did...even though most was spent packing up.

We also wanted to share some pictures of when we took the kids to Galveston. We only stayed for a few hours but those few hours were worth it. How come no one told us that the beaches were so gorgeous there. We even found a native hermit crab. Ernest wanted to kill it to take its pretty shell...Barbaric huh? Just to let you know, I did let him go back into his ocean.

Here is Isaac working on his trunk control before we left for Galveston.

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6 Months Old

2009-08-27T21:05:00.005-05:00

Isaac turned 6 months old yesterday. ....he's growing up so fast! Everything had been going pretty steady with Isaac until he caught a stomach bug. We thought that maybe somehow he had come in contact with it from one of us, but we found out that he was one of the luckies that caught it during one of his clinic visits. It turned out that someone may have had it and a lot of the heart kids came in contact with it. So, we had a fun two weeks of diarrhea and vomiting. We thought it would never end. Thankfully, we never really had to get him admitted for dehydration but we did have to go very frequently to get his blood levels checked and that was bad enough. We also had to be aware that he COULD get dehydrated very easily.

Yesterday, he also scared us half to death because his g-tube came completely out of his stomach. Now, we couldn't really remember the process of what we should do if that was to happen but it was in the back of our minds. Thankfully, we did the right thing by calling his nurses and taking him in right away. We were told that if we wait longer than an hour, that the hole could end up closing up. Whew!!! We had him there within thirty minutes so they were able to put his g-tube in pretty quickly. I'll know what to do next time (which hopefully there won't be).

The only other update is that we could even be coming back home a little sooner than we had expected. Isaac's doctor (on one of our last recent clinic visits) had said that his goal was to get us out of Houston by mid-September. Well, at his clinic yesterday, we were told that after they schedule him for another swallow study (to see what thickness of liquids are safe by mouth for him) and get his drug levels at normal, then we will be released. We're not counting our chickens yet, but that could be as soon as next weekend, but for sure closer to two weeks if not earlier. We're so excited but trying not to think about it.

In between all the commotion of going back and forth to the hospital, we were finally able to take the boys to get some professional pictures taken. Hope you enjoy them and some of our homemade pictures too.

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Can't Wait....

2009-08-11T01:10:00.002-05:00

For what you say…..to pack up and go home! We are all so very homesick and Houston just makes it all worse. There is NOTHING to do here, unless of course you love upscale shopping …everyday. But anyways, enough about that and more about Isaac right?
We had a pretty eventful week last week. Isaac was finally weaned completely off of the Ativan and Methadone, Around the beginning of last week, Isaac started throwing up almost half of is feeds for almost a whole day. It was really scaring me, so we finally called our Transplant nurse coordinator. Because she was afraid that he was not keeping his medicines down, we were ordered to take him in to the emergency room. What a day that was! Two restless kiddos and two grumpy, sleep deprived parents in a small ER room was not a good combination. Until, we figured out ..a few hours later that (by George) there was a tv in there. All we had to do was turn on Spongebob and Eli was taken care of ….for about another hour. So, back to Isaac….labs were drawn, x-rays were taken, and echo was done. This was all done very quickly when we got there but what took hours of waiting were all the results and getting his doctor to come talk to us. After waiting for 5 hours, his doctor finally came in to tell us the results. He said that his bloodwork looked great, his x-rays were clear, his echo was also normal, and the nasal wash (checking for viruses and flu) came out negative, but there was only one thing concerning him. His blood work showed that his white blood cells were on the low side. This could mean a lot and could also mean that Isaac could have picked up a weak virus. There was no way to really know. He did also say that one of his immunosuppressants (Cellcept) could be doing its job a little too well. So, Isaac is now taking 3 less medications…Yay!!! Of course, we’ll never really know what went on that day with him, but at least something good came out from taking him to the ER. Because he was taken off of an immunosuppressant, we’ve been having to take him in quite a few times to get his other drug levels checked. This week will be another series of visits also. His next regular, weekly clinic appointment is this Thursday, and our nurse told us that maybe we could talk about getting them down to bi-weekly. Now THAT would be nice to hear! No definite word yet on the exact date of coming home, but the three months post transplant is on September 6th and its getting closer…
Other than the little scare he gave us, we’ve also been working with him on feeding by mouth and on his physical therapy. He still gags when anything besides his fingers is in his mouth. If you haven’t noticed by his pictures, he loves his hands in his mouth!!! His physical therapy is also coming along really well. He can now move his head from side to side on his own and his neck muscles are becoming stronger every day. He can almost keep his head up on his own when sitting down. He is continuing to learn how to bat at his toys on his own but it does take awhile to get him to pull his arms from the side of his head. He is still accustomed to the restraints they had on him in ICU. He is five months old and about 1 or 2 months behind on his development. We’ll get there!!! He’s got his whole life to go!
Since Eli was such a great sport at putting up with being at the hospital again, we decided we’d treat him out this weekend. Of course like I said before, it was hard trying to find something to do with an almost 4 year old. We’ve done the zoo and the children’s museum and in all honesty it has been too hot to repeat them. We finally decided on trying a place called ITZ, and it was well worth it. We all had fun!!! He even got to take his best friend, Bryan. The majority of our day was spent there eating, playing games, and riding rides. All indoors….that was the best part! I would highly recommend this place to anyone of any age. It was like a mini indoor themepark! The best part was the biggest and best ride that they had in there..it was called the Disk-o. It scared the s*** out of me, but I did get on it more than once.
I can see that if I don’t stop now, I’ll end up rambling so I’ll stop here and just share some of the pictures of the last few weeks.

If you are wondering where Isaac was this whole time.....he was sound asleep (most of the time) in his stroller away from the germs!

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Thursday Clinics

2009-07-24T01:38:00.009-05:00

Its been a quiet week....Eli left this past Sunday. Mom called me about halfway to Midland and said that Eli started crying for us. I talked to him on the phone and told him that his Grandma would bring him back this next weekend. So, he'll be staying hopefully until we get to go back to Midland. He was initially going to start going to school (St Ann's), but after much contemplation, we decided to wait another year. It'll be better next year when we are all settled back at home. Eli is cursed for being born in September, so he'll have to start school later than he really should. So anyways, that's what went on with Eli this week.

Isaac on the other hand...is still doing well here at home with us. I've been having to stay a little far away from him for the past couple of days (stomach bug!..ugh). He had his weekly clinic today, and other than the poking for bloodwork, everything went well. Who likes to see their kids getting poked? All his levels are so far where they want them, so no new changes to medications except for continual weaning of his narcotics. He's almost off of them completely!

We're so ready to come home. Nope, no talk of when that will be, but we are hoping to get things ready for him earlier than later. Mom is bringing up the carpet and setting laminate wood (faux) flooring in Isaac's/Eli's room and possibly the living area. Our hope was to get the whole house done sometime in the near future but we'll start out with the carpeted areas. We're also thinking about getting our total AC replaced or adding some components to it to get the air cleaner and filtered in our house. I'm not a professional in that area so we have to read up on it a little more and try to get some estimates. But the reason why I'm putting this info up on here is to get some opinions. I'd like to know if anyone has heard of the Perfect 16 System? I still have a lot to read up on it, but I figured I might get some comments or opinions on what you've heard about it. Our hopes were also to get our bedroom (add on from previous owners) ducted and added to the rest of the house, so we'll get quotes for that and see about getting it specially filtered. So, if any of you know of a system that does that or about this system, please let me know your experiences. Thanks all!

Today marks an exceptional day for us. Isaac started playing with his car seat toy. He doesn't know how to press the buttons to make the music go off, but he finally started batting at it. We've been trying to get him to do that since we brought him home. We've also been working on his feeding. He's still not used to having anything in his mouth, so he gags quite a bit. I have to catch him when he's hungry. We started doing tastes of bananas. He seems to like it okay, but he gets a little tired of trying to swallow I think.

Doing Phenomenal

2009-07-15T17:45:00.003-05:00

Hi all. Yep, sorry for not updating in almost three weeks. Although, its not easy to know whether people are even reading the updates because there are not usually any comments made. But anyways, now I do know. Thanks to all of you who follow along Isaac's journey.

As you know, Isaac is home with us and he is a full time job (sometimes overtime). But well worth it! Eli is here also and helps me out (when he wants to). Isaac has to take 14 different medicines in a 24 hour period and some are even twice a day. Most medicines aren't long term but he'll still be on at least 5 or 6 lifetime medicines. So, you can imagine how busy I am. We've all got our routine all set up now. He had his first clinic appointment last Thursday, and although it was a long day, it went very well. Nothing much is new except for weaning some medications slowly. His new heart is functioning very well. They just have to get his immunosuppressants at therapeutic levels in his blood. As far as we've been told, the minimum that they have us staying in Houston is three months, but it all depends on how Isaac is doing on his medications. So, we're hoping mid-September (before Eli's 4th b-day) or early October. We can't wait to take him home and show him off. His vocal cords are getting stronger and stronger. We can definitely hear his cry. We've been continually working on his physical therapy. Because he was so used to being still and having his hands restrained by his head, it took awhile to get his muscles developed. He can now almost hold his own head up and has discovered that he can play with his hands. His personality is so cute already. He's already so spoiled. He knows that when he's crying, I'll pick him up and as soon as I do, he stops. What a pooper!

On another note, our family would like to thank all the companies involved with the Brisket/bake sale but especially EOG for generously putting the whole even together. I know some of our family probably took some pictures. EOG has sent me what they took and I was waiting for family to send me others. I haven't received anymore, so here is what we have. Again, thank yo so much. Our family is grateful for everyone who had a hand in it. May God Bless you all and repay you ten-fold. Love you all!

And here are some pictures of our wonderful days at home.

Home Sweet Home

2009-07-05T00:09:00.007-05:00

This was supposed to be his "going home" outfit, but right before we left, he got a dose of lasix and peed all over it.

Saying his final goodbyes from his hospital room in his car seat.

His new bed at home...awwww, so sweet.

ARE YOU READY TO GO HOME?

2009-07-03T09:56:00.002-05:00

A question we were asked on Monday. Of course we are ready!!! Isaac's transplant doc said that Thursday would be the goal but would probably end up being Friday. So us and Isaac had to go for many tests and training before we could take him home to the apartment. Isaac had to have much bloodwork done, he had to have an ultrasound of his veins, an xray, a swallow study, and MRI, and a hearing test. The bloodwork was to check his medicine levels and the ultrasound came out fine showing no other clots. Since Isaac still has paralysis of his vocal cords, a swallow study was done to see what would be safe to give him by mouth. It turns out that we cannot give him thin liquids by mouth, but is safe with baby food or honey consistency liquid. So, we'll most likely not be able to practice with a bottle but we can practice with baby food. He passed the hearing test and the MRI was done to recheck the clot in his head (which looks like it is resolving). Ernest and I had training on administering his medicines and how to use his g-tube and pump. After his last cath procedure, the doctor also warned us that he would have to be on an injectible blood thinner. Ugghhh...we were dreading it....but we learned how to give him his shots two times a day. We was finished with everything by noon yesterday but we still could not get discharged because one of the medicine levels was too high, so we had to wait for his bloodwork this morning. My brother was able to bring Eli for the holiday weekend. He got here at 5 this morning and is here waiting patiently for the doctors to discharge us so he can "take his brother home." As soon as they give us any word of "discharged" we are out of here until next Thursday when Isaac will have his first clinic. We'll take many pictures and post later today. Pray for a safe 7 minute trip home.

Means of Communication

2009-06-28T22:43:00.005-05:00

So, although the video does not do him justice, we just had to share with everyone. Yesterday, Dad noticed that Isaac was "talking" to him. Ernest would talk to him and Isaac would move his mouth and make clicking sounds. I guess because his vocal cords are still paralyzed and can't make much noise, he found other means for making noise. So today, Dad was singing to him and I don't know if you'll be able to hear him but we tried to catch him. It's also like he knows when I'm using my camera. He always looks a little freaked out.

Oh, if the blog music starts playing, scroll all the way down and hit pause before you try to play the video. Otherwise, the music and the video will play together.

Isaac is still doing well. He had finally started back on breastmilk today and we'll have to stop his feeds again tonight. He's got his heart catheterization scheduled for late morning tomorrow. After that procedure, they'll let us know a closer date of taking him home. I'm thinking by next weekend or right after next weekend. That's really all I have time to post today...maybe a little more tomorrow after his procedure. God Bless all tonight!

4 Months Old

2009-06-27T10:54:00.005-05:00

Well, Isaac turned 4 months old yesterday. He finally had his g-tube surgery two days ago after waiting all day for it. They stopped his feeds at 4am that day and he had to wait all day without food. He had his surgery at 7:30pm and was finished within the hour. He did excellent. They were able to take the breathing tube out in recovery...what a trooper! Yesterday was a very long day for all of us. After recovering from his g-tube placement in PICU, they moved him back to the 15th floor. His surgeon requested that he still not have any feeds or liquids until this morning. So, Dad and I took turns holding him all day yesterday. He wouldn't even sleep for an hour at a time. So finally after what seemed like forever, this morning (at 10am), he was finally granted some pedialyte. I think he'll sleep pretty good today. We'll continue to work with him on mouth feeding but it'll probably take awhile. He also had his first physical therapist come to see him a few days ago. We learned how to help stretch out his neck for him to be able to move his neck on his own and how to help him start holding his head up. After the G-tube placement, we're one procedure closer to getting him home. He's got to have a heart catheterization to get his IVC ballooned. Its supposed to be a simple procedure but will still have to be put under that is scheduled for Monday. Please pray that things go well and that we can get our buddy home.

Physical Therapy

Post G-Tube: No tubes on my face!!!

Look Mom, Nothing's Holding Me Down!!!!

2009-06-22T21:29:00.006-05:00

Yesterday, when we came in from cleaning our old apartment, we noticed that he was off of the monitors. They have oficially moved him to acute care rather than step-down ICU. Last night was the first time we were able to hold him without the monitor wires. We held him and walked around the room just because we could. It was wonderful. He still has the pulse ox probe on, but they only plug it in to check his vitals every 4 hours. Of course he also still has his picc line and they still need that to put one of his meds through IV. We took some cute pictures this morning down below. Notice him sporting his first "converse!"

On another note, we are so proud of Seth and Amy for being representatives in Oklahoma for their son Logan. If you haven't already, please visit his blog and watch the interview. You did so great, Amy!

Happy Father's Day!!

2009-06-21T20:00:00.007-05:00

Happy Father's Day to all those hardworking dads out there. Dad wants to thank all that texted him today, and here is his message to you......

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Sorry, sometimes our texting is blocked. We can usually receive but sometimes it won't forward or send messages.

I think Dad had a good Father's Day weekend. Although, Friday was busy with moving and all, Eli also came this weekend. We were able to take him to the Houston Aquarium yesterday. We all had fun!

So, that's about it....

Oh wait, I suppose I have to give an Isaac update right? Isaac is doing awesome and a step closer to coming home to our new apartment. There is one main thing holding him back at the moment, and that's the feeding issue. Occupational therapy comes by every day to work with him and us, and he seems to get better every day. He just forgot how to suck and is trying to bite instead of suck. Even if he does learn in the next few days, he will probably not be able to take his whole feed. He will still most likey go home with a g-tube. Yes, it is another surgery but not near as risky as his other surgeries. Tomorrow, he is going for a swallow study. Because his vocal cords are still paralyzed, they want to rest assure that any liquid that goes down his mouth will not go to his lungs instead of his stomach. They will see whether he will need thickener for his milk or just straight milk when we go home. Then, even after all of that, he will need to go in for a catheter procedure to balloon his inferior vena cava (IVC) because it is getting smaller. Getting blockages in the veins is not necessarily a bad thing, but because he will need this vein for future heart biopsies, he has to get this done also. Doctors are saying that if all goes well, we could be home in less than two weeks...!!!! So, we've got three procedures that he has to do...a barium study, g-tube surgery, and heart cath to balloon his IVC. I won't even tell you how many meds he's on at the moment, because some are getting weaned down, and some he won't need when we go home. That's about it for now. We're anxious to see what the results for the swallow study are tomorrow. Pray that things go well. God Bless all. Here are some smiles for you to enjoy.

Bragging Rights

2009-06-17T12:09:00.006-05:00

So, I think we have the right to brag a little. I wanted to show off some of the handmade blankets for Isaac. My mom has sewn many a blankets but she also crocheted one. Here's the one she made.

I love it because its so thick and the color scheme is perfect.

This is the one that Dad crocheted. Yes....Dad did it!!!! I love this one because its so big and soft.

And here's the one I was finally able to finish. I don't crochet or knit, but I love to cross stitch. The blanket is just a piece of fabric that already has squares on it and so I stitched the characters and finished it up with Isaac's name and the fringes on the edge.

And how about a picture of my little man. This is right before bedtime last night.

"The Floor"

2009-06-15T18:57:00.004-05:00

We have moved in with Isaac...to the 15th floor at least. He has been moved to his own private room, and looking so good. This is a step closer to getting to take him home (to the apartment). A week and a half post-transplant and we can't believe that he is not in ICU anymore. He was extubated just two days ago and most of all his tubes and lines were taken out yesterday. He's got a central line (IV line), nasal cannula and of course his breathing tube. Since he was extubated, he's been trying to cry and we can't hear him. They tested his vocal cords and found that there is partial paralysis. It'll take awhile to heal but that in turn causes him to be here longer to be able to learn how to eat again. He can't start learning how to eat until his vocal cords get stronger. So, they'll slowly start to work with him on non-nutritive sucking to get him to remember how to eat. Other than working on getting just the right dosages on his transplant meds, the doctors' main goal is to get him to start eating on his own again. We really hope that he does, because if not, he'll have to have another surgery to get a g-tube in place. Let's pray he learns to eat. Other than that, we will just take it day by day.

This is already a busy week. When we heard that they wanted to move Isaac down to the floor, we had to get busy packing to move up here, and also had to start packing up some stuff to move to another apartment. We'll be moving to a 2-bedroom this Friday, or rather Ernest will probably be finishing up the packing on his own. We'll have Bryan helping him transport from apartment to apartment. Whew...so glad we know at least one person here. On another note though, my mother-in-law will be bringing Isaac's crib and also might be bringing Eli. We can't wait to see him again! Soon, we'll all be able to "live" at our apartment all together again.

So, not much else to report, except that Isaac can finally get dressed up in his many clothes that he's almost outgrown. We gotta change him almost every few hours to get good usage out of all the clothes. Poor Isaac!!! He's momma's babydoll!

Post Transplant Update

2009-06-11T15:45:00.003-05:00

Sorry for such a long wait on an update. Isaac is still doing very well with recovery. We are just taking it day by day and not wanting to rush. We're also getting stuff packed and ready at the apartment. Because we anticipate that Isaac will be able to come home in a few weeks, we're in the process of packing up and moving to a two bedroom apartment. For one, it'll be more room to have both boys with me and two, no more cigarette smoke coming through the vents. We hated coming home to a smoky apartment. God is great and loves us so much. It just so happened that this DOWNSTAIRS 2-bedroom apartment became available right when we needed it. People were calling and inquiring about one right when we were signing the lease. Its in a much better location of the complex and has a very pretty view with a shady tree. So, while we give Isaac a chance to recover and rest, we'll be busily packing and moving getting ready for him to finally come home. After his transplant, because it took so long, he was extra puffy. So the last few days have been spent getting the extra fluid off of him, and he looks so good now. We came in this morning and his chest tubes were gone...Yay!!! 2 less tubes and closer for us to hold him again. Right now, he's got a Picc line (long term IV), an arterial line (to better check pressures), a dialysis line (for extra fluid drainage), and the breathing tube. Doctors are already doing volume support trials to get the breathing tube out this weekend. We're so happy about that. But like I said, we're not rushing. We'll be ready when he is. More pictures will be coming soon. You thought he looked good before, wait till you see him now.
Hopefully, we'll be able to take him to the apartment within the month. And when we do, it'll still almost be like being at the hospital. Isaac has to be in almost complete isolation. We even have to limit the visitation of family. For those that don't know about transplants, for the first months, Isaac has to be on medications that suppress his immune system so as to not reject his new heart. He has to away from germs as much as possible, because it will be hard for his body to fight off an infection or virus.
Eli went back home with Grandma this weekend. After two weeks, he was ready to "go back to my house. He was actually asking Grandma to come pick him up. We don't blame him. What kid would want to be at the hospital everyday? Soon enough...we'll all be able to come home.
God Bless all that pray for Isaac. Please keep praying for the donor family also. We are indebted to them. Thanks

Recovering

2009-06-07T11:48:00.006-05:00

Isaac is doing well and already wanting to move around and wake up. They are working on weaning the vent and getting all the extra fluid out of him. He is looking so good with saturations at 100. He almost looks like a different baby. The surgeon is hoping to get some of the tubing out tomorrow. Let's pray that it happens. No rush though....he's gotten over a big hurdle and needs to get stronger to get over any more that are ahead. We took many pictures of him the day of his surgery before he went in. We've taken quite a bit after his surgery but the only one we are willing to share is a pictue of his foot. I don't know if anyone but us can tell the difference, but he is PINK.

Its difficult to think about, but we keep thinking of the donor family and their enormous generosity. We haven't gotten to find out any information that they CAN give us about the donor (race, and gender). I wish there was some way we could help as much as they've helped us. If I could give them everything we had, we definitely would. There are no words that could express how we feel right now. Its sort of a bittersweet moment....

Pre-Transplant

Post-Transplant

Angel Heart Birthday

2009-06-06T16:06:00.001-05:00

I'm almost speechless... When we could finally see Isaac(at about 10 this morning), he looked so good...his fingers, toes were PINK and no longer pale white or blue. He is still doing awesome and already trying to wake up. They are also starting to already wean the ventilator. Sure is a fighter. Sorry update so short. Typing on a very small keyboard.

Out of Surgery

2009-06-06T07:13:00.003-05:00

Isaac's surgeon just finished talking to us and Isaac is out of surgery. He said that as complicated as it was to do his transplant, he is very pleased at how it turned out. It'll be a couple of hours before we get to see him, so we're gonna go home, take a shower and come back in time to see him.

2:10AM UPDATE

2009-06-06T02:22:00.003-05:00

His new heart started BEATING at 1:16am. My next update will probably be after or while they are closing him up. Thanks to everyone for listening to our ramblings and keeping him in your prayers.

1:00AM UPDATE

2009-06-06T01:55:00.002-05:00

The last update we got was that Isaac's heart is out and the new one is in. Of course they aren't done yet...the rest has to be sewn in. Another hour closer though.

Ramblings

2009-06-05T23:36:00.003-05:00

So, while we're here waiting for updates on Isaac, I'm finally getting a moment to really think. It gets me thinking of the generous donor family that is giving my son his life back....absolutely selfless and we will forever be grateful to them. May God keep them strong through this difficult time and let them know that their child will live on in Isaac. This moment is so....surreal. I feel like I'm dreaming....

We have also just gotten another update. The surgeon is still working on getting his heart out. They have to remove the stents and bands that they had placed on his first surgery, so it will be a little longer than just taking out his heart and putting in his new one. The nurse coordinator also said that she saw his new heart and "it looks perfect....as big as a big strawberry."

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UPDATE 3

2009-06-05T22:36:00.001-05:00

Isaac's chest has been opened and the surgeons are working on getting his heart out to replace. They also said that his heart is here!

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Update 2

2009-06-05T17:52:00.002-05:00

Isaac was taken back at 5:00pm. They'll come and give us updates at about 6:30. There won't be much to tell because that will be at the point where they are administering anesthesia and putting the lines in him. I'll update as they update me.

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UPDATE 1

2009-06-05T13:45:00.001-05:00

Isaac will be taken to the OR at approx 4. Ughh.. The hours r dragging...thanks to all of u praying for him today.

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THE CALL

2009-06-05T12:01:00.000-05:00

Sweet Jesus...Our prayers have been answered..they've got a heart for Isaac. Surgery will be some time after 3. We don't know much more than that at the moment. We are still trying to get to the hospital. I'll keep updating as we know more. Please keep him in your prayers today.
God Bless you all!

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All Smiles!

2009-06-02T18:42:00.004-05:00

Isaac is still doing very well. He is still off of the ventilator but doing C-Pap therapy for 2 hours every 6 hours. No problem with that....no rush little man!! So, we've gotten to hold him, play with him, and took some pictures while we were at it. He is still active for transplant and is staying at status 1A until he can get a heart, which is great because he is still first in line in this region. Not too much else to report, except that if he keeps doing well, he'll be moved to a private room sometime soon. I don't know if we can say this enough, but thank you EOG....thank you thank you for setting up these great fundraisers for us. I know it'll really help in the long run. Thanks also to our family helping with the fundraising and thank you Exterran also. I know many more companies are involved in helping us out and really...thank you is not enough. You are all in my prayers. God Bless!

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and how about a smile.....

wait for it....

Picture of Isaac, Dad, and Eli

2009-05-27T16:10:00.003-05:00

Isaac is still doing well off of the ventilator. He had been on the C-Pap machine all night and all morning When we called to check on him this morning, the nurse told us that they'd give him a break from his C-Pap so that Dad could hold him for an hour. So, while he's holding him, I took a pretty good picture. Maybe we'll get some more in days to come. Doctor said he'll be on the C-Pap for a couple more days just to be sure his lungs are able to inflate themselves normally. He'll get one more break tonight and then tomorrow, he'll get more breaks. God is great! Keep praying for that "angel" heart to come along soon. Thanks everyone.

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A Marvelous Day

2009-05-26T14:50:00.004-05:00

Isaac has been extubated!!!! He is free to move around, cry, wiggle and most of anything he can do. We're so excited. Its been since Easter that we've been able to hold him or even hear him. He kind of scared himself when he pursed his lips together and made bubbles. He had been put on just a nasal cannula for oxygen, but after the xray (done after extubation) one of his lungs was partially collapsed. Now he is on a cpap machine until his lung can inflate itself,which will hopefully be tomorrow after his morning xray. Then maybe then we can hold him. Tonight we left the hospital a little worried because Isaac hadn't peed in 7 hours. We're hoping that after the extra dose of lasix he will and so they won't have to put in a foley. The only other new changes recently was that they also had to give him a little extra blood. No big deal on that. Isaac will stay in CVICU for a few more days to make sure he does well off of the ventilator. After he's stable for a few days, he will either move to NICU or to step-down on the 15th floor. Its also a great day today because Isaac is three months old. What a great 3 month present for him. HAPPY BIRTHDAY BABY ISAAC!!

On another note, Eli came this Memorial weekend and will be staying with us for at least a week again. Yesterday, we took him to the Museum of Natural Science and the Children's Museum. We all had great fun!
Sorry the update is so short. With all the excitement and Eli being here, we were just a little busy. I'll try to upfate more tomorrow. And if he's off of the cpap, I'll take pictures of our little man. You wouldn't believe how big he is. They are really trying to beef him up.

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Back on Active

2009-05-12T18:18:00.002-05:00

Yep, Neuro has cleared Isaac to get back on active for transplant. It's great news, but we still have to wait. Currently, he is still intubated with no plans of extubating in the near future. He is on the lowest settings of the ventilator but when they do trials for breathing on his own, he gets angry and his numbers go down. Please keep him in your prayers! God Bless everyone!

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Headed in the Right Direction

2009-05-08T18:59:00.003-05:00

Isaac has been stable. I'm never going to say anything better than that. It seems that when I do, it turns in a different direction. After being on a course of antibiotics and getting breathing treatments, let's just say that Isaac is "headed in the right direction. You wouldn't have even known that he had neuro surgery a week ago...even the next day, he was awake and looking around. He is still intubated and only on two drips now. They have weaned him off of the Fentanyl(narcotic/sedative drip) but if he shows signs of withdrawals then they'll give him Methadone. So, he's on milrinone and very low dose heparin (which they will change to aspirin soon). He's on some of the lowest settings on the ventilator and working towards extubation this weekend or early next week. Again, no promises! Currently, he is still inactive on the transplant list. His last dose of antibiotics is tomorrow but we still have to wait for neurology to give the transplant team the go ahead to put him back to active. This is because the clot in his head could've been due to the fact that he was on high dose heparin (for the clots in his legs). So if they were to tell the transplant team to activate him and he was to get a new heart in the next couple of days, the clot in his brain could get bigger from all the heparin that they'd have to give during and after surgery. Personally, I wouldn't like to rush it, especially because the clot in his head is already dangerous, but Ernest would like him to be put back on pretty quickly.

So...sorry it took so long for me to update. We were just taking it day by day watching him closely. This was probably one of the hardest last couple of days. Wondering, hoping, and praying....

Eli went back to Midland last Sunday. It was really nice having him here for the whole week last week. He put us back and gave us a taste of the real world for awhile.

Here is Eli leaving us while sporting his new spongebob suitcase...thanks Jaime, Lulu, Kaylee, Jamison, and Zach

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A Bump in the Road

2009-04-30T15:03:00.004-05:00

Last Update 8:30pm
He's out of the procedure and he came out fine. They found that it was a blood clot. Its not great news but the neurosurgeon said it was better than him having an infection in his brain. Isaac will also still remain inactive on the transplant list because his blood cultures came out positive just today. So, they'll treat with antibiotics again and we'll go from there. We're just hoping that the episodes he's been having are coming from the infection that he has going on rather than from his heart. Again, thanks for your prayers.

Update
They took him for surgery at almost 7pm. If this abcess is pus or blood and not a mass, then the procedure should take 1 to 2 hours. Hopefully its not a mass that they have to cut in and biopsy then it would take several hours. Please keep praying for him.

In addition to the blood cultures and genetic testing, an MRI of his brain was also ordered. His MRI was done this morning and they called us in for a conult. It turns out that they found an abcess on the back part of his brain. They are telling us that it could most likely be one of two things. One is either pus, which would turn out to be a bacterial or fungal infection or two a blood hemorhage. Either way, both are treatable. So today, neurosurgeons are scheduling a sort of biopsy. They'll go into his skull, drain out the liquid and test to see what it is. Because we were so scared when they called this morning to tell us that something "abnormal" was found, we didn't get to ask if maybe this situation was causing his episodes or how that abcess got there in the first place. Another bad part is that since it's still not known if the abcess is an infection, he is listed as inactive on the transplant list. I assume that if its a hemorhage, than he'll be put back on and readjusted on his anticoagulants to fix that. We are still waiting for the neurosurgeon to come tell us when they will do surgery today, so I'll try to update as I get information. Thanks everyone for all your prayers. God Bless you all!

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Rollercoaster!

2009-04-29T17:30:00.006-05:00

Agghhh....we want to scream. Isaac had a few Bradycardia episodes two days ago. His heart rate dropped, his pressures dropped, and he started to swell again. And it seems that when he swells, his CO2 and lactates go up. Our doctors are still trying to figure out what's wrong. We think that because Isaac had been awake more, moving around, and coughing up through the vent tube, of course he's causing more secretions and needing more suctioning. I think some of the nurses just didn't realize that they needed to suction him more often. So his lungs have showed to be a little more saturated. He had just started his feeds a few days ago and was on almost full feeds when the episode happened. So they stopped his feeds and added a few more drips to his already growing medication. They don't even know what's wrong with him yet. They've drawn some blood for genetic testing to see if maybe something is causing the high lactates, but we won't get the results for a few days. The worst part is that he is also on a drip to keep him sedated. They think that the agitation of him waking up and moving around caused these episodes. Right!!!?? They don't even know what else to tell us. More cultures were drawn a few days ago and some bacteria was found that is growing in his lungs. So here we go again with another antibiotic. Thankfully, this will not affect his status on the transplant list. They'll just treat and still keep him active. I don't even know what to say anymore. We just keep going downhill with little hope of getting back up. I wish his heart would get here...especially now. Not to say that it would totally fix him...but at least it would hopefully fix all his heart issues. Now we just have to wait and see if anything else is going on with him. He can't seem to recover well enough for them to extubate. We're just waiting to see if any of the tests show anything else going on. Please keep praying. Oh, but I almost forgot to post something very important. Last week, Isaac was baptized. Originally, we had thought to wait until we got home, but we finally just decided to get it done.

So, Eli is still here and because Isaac is in CVICU, it hasn't caused any real major issues. We try to keep him occupied and so here he is playing one of our computer games (memory). He's very good at it and who would've thought a three year old to know even how to use a laptop....

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Better Days are Coming...

2009-04-26T13:09:00.010-05:00

Sorry for such a late update. I guess Texas Children's internet was down this week. This is the first day that internet has been up since Wednesday.

So, Isaac has been doing a whole lot better. He's looking more and more like himself everyday and more so today. Its kinda sad that he's more awake now and because he's still intubated, they want to keep him calm and sedated. I really hate when they "have" to give him sedation. I tell my husband that its only because they don't want to take the time to sit there with him, talk to him, and calm him down. He's only mad because the breathing tube is agitating. Since he has been doing so great, they have finally been able to wean off of the vent support. Hopefully, today he will be doing volume support (exercise with his lungs on his own) and be extubated within the next few days. We can't wait!!! Its been a whole two weeks, and I think we took holding him for granted now that we can't. There hasn't been too much that changed since my last post. Although, the doctors have said that Isaac may have been having problems recovering because of a yeast infection that they found he had. Its not really certain though. Doctors' first instinct is always that its a cause of his already bad heart function. We knew it wasn't the whole time...it's always been an underlying problem that makes his heart function worse..whether its dehydration, staph infections, urinary tract infections. It's all part of being at the hospital. I mean the heart function is not necessarily worse but all of these things will just make his heart try to work harder. So, its been a busy two weeks, and he's finally really progressing. We're really hoping that after he gets extubated, that they'll move him down to NICU. Its so much easier to see him down there and because they usually don't have any need for sedation. Let's not get our hopes up and count our chickens before they hatch. We'll just take it one day at a time. No new pictures of Isaac yet, but he IS 2 months old today. I really don't want to take many pictures while he's intubated. It's heart-wrenching to see him uncomfortable.

On a great note though, my mother-in-law and sister-in-law brought Eli with them when they came this weekend. We were so ready for him to come back and planned a short fishing trip. For months now, Eli has been asking us to buy him the Rocket fishing rod ($29). So, we finally decided to buy him one before he got here and come to find out that the fishing rod rang up for $10. We couldn't believe it. I don't know if it was an error on their part, but we didn't hesitate to go in and buy another one. Yesterday morning, we took a short 20 minute trip to the La Porte Beach to go "fishing." Of course, we didn't catch anything but Eli had a great time. This boy is too smart for us. The fishing rod was a little difficult to figure out and manuevre, but he figured it out in no time. I'm posting a few pictures but oh yeah, when we started settling on a spot at the beach, a snake washed up. Ughh...scary!!

Daddy teaching Eli how to fish with a real fishing rod before the rod broke into pieces (cheap pole) after casting it out.

and Eli just being ELI.....

OH YEAH...I forgot...Eli is staying with us for a little while. I had planned on asking him if he wanted to stay with us for a little while but didn't imagine that he really wanted to. We asked him and he really had not hesitation. So, for at least a week, I'll be spending morning and afternoon with Eli and then after Ernest gets out of work, we'll be heading to the hospital. As bad as I feel for leaving Isaac alone at the hospital most of the day, I know Eli needs to be with us too sometimes. We'll do a week and see how that goes.

Please keep praying for Isaac's new heart. We can't wait to bring him home!!!!

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A Little Better Every Day

2009-04-17T18:27:00.003-05:00

So, Isaacs Cath doctor scared us yesterday when he said that because Isaac has been having problems these past few days that he was scheduled to have a diagnostic catheter procedure today. Another one!? He said "this won't be an interventional cath, but just one to get more information on whether Isaac will need surgery again." But, he also told us that it was tentatively scheduled for today unless Isaac showed improvement overnight. We went home dreading another cath that he would have to recover from.... We got here at "0600" this morning and to our surprise we start talking to Isaac and HE OPENS HIS EYES! We were ecstatic...that means he's getting better. So, we talked to him while we were waiting on doctors to consent us for the procedure. Finally, they came in and said the cath was cancelled. Two doctors came in to explain to us (at different times) that they cancelled it because in their discussion about Isaac, they feel that this procedure may not even help him but might just worsen the recovery process. What scares me about this is that there's not much more that can be done for Isaac at this point, unless its something that medicine will help. With the cath that was going to be done today, it was said that they could get more information as to whether he needed his pulmonary bands tightened more. In their discussion though, his surgeon said that the bands could probably not get tightened anymore without damaging the arteries. In our opinion, we still think that he just needed help with getting rid of the extra fluid and more recovery time. It looks like we might be right!!!! He's a fighter and our champ!!!! He's looking more and more like Isaac everyday. He's still on the breathing tube and all the drips he was one two days ago. No other major changes, but he is doing better at breathing on his own. We're looking forward to maybe extubate him this weekend unless he does it himself...(gasp)! He's starting to move more and be awake longer even with sedatives. Good boy....you show them!!
Now, even though it may sound scary that not much else can be done for Isaac from a surgery standpoint, we had a good talk with our Transplant coordinator. We had many questions floating around in our heads, and especially this week with Isaac scaring us half to death. All our questions were answered and come to find out...she told us that a heart was offered to Isaac two weeks ago... but the transplant team did not feel like it was a "good offer." There's many criteria that TCH has to go by and are very picky about the hearts that are offered to them. We're happy...we don't want them giving him just any heart! They'll know which is the right one for him. But with that, it gave us much hope that at status 1B at least he has gotten an offer. Not too much longer!!! Keep praying...He's listening! God Bless you all that think of Isaac every night.

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Rough Couple of Days...

2009-04-16T14:04:00.002-05:00

3 days post heart cath, and its a slow recovery. They were hoping to extubate Isaac on Tuesday but while they were testing to see how well he did on his own, his heart rate went up, his co2 output was not great, and he was turning purplish. So, he is still on a breathing tube and has so many different ivs on him. He was extremely swollen the last couple of days so he was put on a Lasix drip. When we came in this morning, most of the swelling went away. Since the cath on Monday, he's had two echos done and his heart function is not great. They are still trying to figure it out. In my opinion, I think it was all the fluid build up that he was not getting rid of. Now that he's been on the drip for a whole day, his heart rate has come down gradually and he just looks overall better, but what do I know... Because it was an easy fix, that's what I'm hoping it was. I'm hoping he doesn't have to have any more procedures done until he gets his new heart. He's on 4 different drips...heparin to thin his blood, calcium, Lasix, and milrinone to help his heart function. I wish they would figure out if there is another underlying problem. One good thing that came out of this, is that he is on the highest status for a heart transplant (1A). In the mean time, we wait and take it day by day. Please pray that his recovery continues to go well and that his "angel" heart won't take too much longer to get here. God Bless everyone!

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Cath went well

2009-04-13T22:34:00.000-05:00

Sorry so late on the post. Isaac went in at about 9 this morning and they didn't finish until about 5. It took longer than expected because the main artery that they use for the cath was completely blocked. So they took time to unblock it befofe they could start putting in the stent. That part was finished and they had a problem with the stent being too big so that part had to be fixed also. Although the procedure took long, Isaac was stable throughout the whole thing and came out fine. At the moment he's a little swollen and his right leg is especially blue and swoLlen. He has already tried to wake up but doctors still want to keep him comfortable and mildly sedated. They are hoping to extubate tomorrow, so prayers that it goes well. Thanks everyone and God Bless.

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Back to CVICU

2009-04-10T19:24:00.002-05:00

Isaac is back in CVICU...again. Last night, about 9pm, Isaac's oxygen saturations went down to the 60's and occasional 50's. He is supposed to be saturating at above at least 70. It took them awhile to figure out if he really was or if the probe wasn't working. They tried everything...changing from feet to hands, changing probes, and nothing changed. So doctors were called in, they called for an xray and they called for them to put him on oxygen. As soon as he was put on oxygen, his saturations came back up. He was on oxygen for the rest of the night and this morning. During rounds, one of the doctors turned off the oxygen to test him, and he started desaturating again. So again, xrays, blood cultures and an echocardiogram was ordered. Doctors filled the room, it was loud and they were stressing him out even more. They wouldn't let him just rest. Everyone was trying to do every kind of test one right after the other, until I finally told them they were stressing him out. Doctors finally just decided to go ahead and move him to CVICU for closer observation. Everything is pretty much the same...still on oxygen but stable as long as he stays on oxygen. The heart cath to stent his ASD is still scheduled for Monday unless something else changes drastically. He is currently on IV fluids and not feeding. I feel so awful! Sometimes hunger pain is the worst kind of pain there is. But because he was so tired from this morning, he's been resting most of the day and hasn't really cried for his bottle. He will be observed throughout the night and then they'll see about starting his feeds up again. We still don't really have any answers but doctors are hoping that the ASD is causing all of this and that it will be gone once the procedure is done on Monday. Please pray!!!! We are so stressed at the moment. They've tried to reassure us that being on oxygen is not so much an emergency, but still....its something that changed so fast.

On a better note, Eli is here. He arrived just as all of this commotion was happening, so he was not able to see his brother. He's also got me worried about him. His eczema/allergies have flared up much more than ever. That's another reason for him not being able to see is brother. I'm hoping we can get him cleared up by Sunday before he goes back home.

So again, please keep Isaac in your prayers this weekend. We're hoping this procedure on Monday will keep him stable again without the oxygen. Wouldn't it be nice for Isaac to receive a new heart for Easter?!

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Prayers for Heart Cath Procedure Monday and HAPPY EASTER!

2009-04-09T14:49:00.004-05:00

So we've been pretty comfortable and a little happier getting to stay with Isaac in his new room. Yesterday morning, during doctor's rounds, they surprised me by telling me that a heart cath was scheduled for today. Nothing much more was said but one of the doctors did say that the heart cath doctor would be speaking with us later today. I waited....and waited until finally at about 5:30pm, that same doctor came and said that they had a problem. It was realized that there are no rooms available in the ICU units and so therefore it could not be done today but that it was going to be scheduled for Monday instead. Sure, its not surgery but pretty close. They will be going in to stent his ASD. This is actually a process that is done with the hybrid norwood, but since the hole was already there, they said "why fix it if it ain't broke." They have found that some ASD's close on their own, but some stay open. And with Isaac, they thought not to mess with it in case it didn't close up. Since his last echo that was done, they have said that the hole is gradually getting smaller and that they need to do this procedure now than later before its really too late. I'm a little relieved that it won't be done until Monday. It'll give us a chance to spend Easter with Isaac and Eli without Isaac being under sedation. We'll try to get some good pictures of them together. But anyways, I don't know what time on Monday, but I'll post as we get anymore information. Please keep praying! His surgeon is surprised at how well Isaac is doing at the moment. He's still very stable and is almost taking half of his feedings by mouth at almost every feeding. Sometimes we can't get him good and awake for his feedings. Also please keep praying for his "angel heart" to get here soon. God Bless and have a Happy Easter!

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My New Room

2009-04-03T19:49:00.002-05:00

Isaac is finally out of NICU. We can't believe it! We probably could've been moved a long time ago, but I think Isaac liked the nurses there too much. Everytime they would tell us that they had a room and we were moving, Isaac would act up. Nothing major...just a little blood in his spit up. By the way, it was nothing! Either the baby aspirin or the NG tube caused it. The aspirin was given to prevent the stent from any clots, but they told us that they are taking him off of it to see how he does. So anyways, we have moved in with him. Its not at all like they said it would be. Sure, there's quiet and privacy for maybe an hour at a time. Last night was pretty eventful..we met so many nurses and doctors and just too many people during the night. I hope its not like this every night. NO SLEEP! They told us it'd be a pull out couch enough for two people. Please....barely! Its the size of an XL twin. But, we have our own bathroom and shower... But really, we just wanted to let you know, that Isaac is not considered critical anymore. The only other thing they've changed with Isaac is that he is taking as much as he can by mouth at every feeding time that he's awake. He has improved so much! He won't take the whole bottle but at least he attempts as much as he can...which is usually about a quarter of his feed. Even if we are tired and deprived of sleep, its all good news. We shouldn't complain. We've been extremely blessed! I'm also excited to see Eli for Easter. I wish it was longer but its only gonna be for that weekend. You can't imagine just how much we miss him. Everything reminds me of him and I try to avoid them. The cartoons on tv, the happy meals that I used to eat with him. But, we'll take what we can get. I just hope Eli (and I) take it well, when we have to part again.

Isaac is 1 Month Old!

2009-03-26T18:56:00.014-05:00

Happy 1 Month Birthday, Isaac! I can't believe its been a month already! Its really flown by....I don't know if that's good or bad. Before anybody comments on this, yes...its my birthday too. Probably the worst one I've ever had. I hope it doesn't get worse than this. Don't get me wrong...I feel very blessed that Isaac is healthy at the moment, but I can't seem to think of a better gift than having my two boys at home with me...

So, back to Isaac....we've taken several pictures of him today, seeing as he is a month old, but we also took some special pictures yesterday. Thanks to First Memories (a non profit organization), I was able to make a srapbook card with his pictures and our pictures together. I know I could've done better but we asked them to take his pictures at 12:30 and so by the time they got to his bedside, I had about 15 minutes to create his card. Initially, we thought that they helped with taking just his first pictures but they are here every Wednesday and some Saturdays to take pictures for anybody that wants them and then the parent can srapbook the photos. We also didn't think that we should take his first pictures with tubes and wires, so we wanted to wait. Well, I didn't realize until yesterday that they take pictures with just regular digital cameras and like I said...they are volunteers, so they aren't any real photographers. That was fine with me...I didn't mind. So anyways, we took pictures yesterday, they printed 4 of them, gave all copies on a disc, and then I made this card.... --->

Isaac Updates

2009-03-25T13:49:00.006-05:00

The cardiac cath doctor spoke to us yesterday and he said that there is no need to do a heart cath at this time. He had been on vacation this past week and when he came back Monday he said that the other doctors and residences shouldn't have gotten us so worried about this little hole. He explained that the hole closing is a very gradual process and he shouldn't need the procedure now because its not very necessary. He said that they don't really want to wait until it IS necessary but they will keep monitoring. They took him off of oxygen yesterday while we were talking (doctor said he was testing him) and for a few hours nothing changed. He started desating a little bit so they put his cannula back on but on room air. They took him off again last night and he is still off as we speak. If they feel that he needs it then they'll put him back on. Nothing yet though....he's very stable and breathing on his own just fine. So they'll keep a close eye on him todcay and possibly tomorrow, he can finally be moved to the 15th floor (if they have a room available of course). Nothing else is really new but of course we're happy that he may not need surgery or any procedure anytime soon (we're hoping). We're just gonna sit here patiently but anxiously (is that possible?) and wait for his new heart.
Midland EOG....thank you so much for Isaac's banner (although I have not seen it yet). It'll come in handy once they move him up to 15. I guess that's why Ernest hasn't brought it home yet...we can't really hang it up here in the NICU. The first time we were here, they had him in a private room and now he's in a common area that kind of remind us of a cubicle. So, once we move up, we'll hang it up in his new room.
I also wanted to post that even though we may not talk about him much on this blog, WE REALLY MISS ELI! He should really have his own blog! Just wanted to get that out in the open. Its aweful being here without him, although we know he is having a great time with his cousins. We're not even really sure of when he can come and stay with us again. It'll be difficult when we move up to 15...I don't know if they'd let him stay with us. Don't get us wrong we absolutely love Texas Children's Hospital (they are miracle workers), but I think their weakest points are that they don't accomodate for your other children. What would happen if we were absolutely by ourselves and didn't have anyone to watch him?. They could at least provide some kind of discounted child care couldn't they? I mean good gosh, they don't even give you a break on parking. We'd like to own a parking lot here! It'd make us millionaires in one day it seems. $12 a day!!!!!!! We're in the wrong business! So...yeah...sorry bout that. Stress reliever!!!
Here's some more pictures of Isaac in his different outfits. Wish the angles were better but its a little hard when his crib is so high up.

Another Heart Cath

2009-03-21T22:15:00.002-05:00

So...we thought we'd be moving to the 15th floor,but doctors have decided that they need to do another heart cath. This will be done to put a stent in a hole that Isaacs heart has that is getting smaller. I can,t remember what its called, but its a hole that his heart needs to keep his body's bloodflow steady. Doctors have not told us when but they said sometime next week. They had been trying to wean him off of the oxygen but haven,t been able to and that's when they noticed that the hole was getting smaller. They had warned us about this before but we're still so scared because its still a procedure where he has to go under anesthesia and get intubated and all that mess. It hurts our hearts to see him intubated..can't imagine how uncomfortable that must feel. So again, we'll let all know when this procedure will take place. Keep praying for his new heart tocome along. God Bless you all.

Elated but also Heart Broken

2009-03-19T18:52:00.009-05:00

Great news....as of later today....Isaac is back on the transplant list. He has taken at least 7 days of antibiotics, still has 3 more days to go, but nonetheless...he's back on active.
But why am I upset...Eli has left back to Midland with Grandma today..... :( I don't really know how long he'll be there but Ernest said that when he wants to come back, he can go and get him. But for now, Eli is happy. What kid wouldn't be happy not being cooped up at a hospital everyday all day!? But I miss him already! I think I took him for granted while he was still here. I should've played with him more! My mind and heart just felt and still feels so overwhelmed. We'll just have to take it day by day.
So, what's been happening with Isaac. Well, like I said until today, we've just been waiting for him to become active on the transplant list. Doctors have already said that he will be moving to a 15th floor private room. Its just a matter of when a room will become available. They say tomorrow!!! So, I've got to get home and pack my stuff so that we can stay up here with him. Occupational Therapists have started to introduce bottlefeeding two days ago (see pics below). OT said he was doing great that day but we still don't want to push him too fast. He took a little bit by mouth thaty day. We tried again yesterday but he took less. They had also increased his milk volume yesterday, so OT thinks that was the reason why he wasn't up to bottle feeding. He is being fed 64 ccs by NGT every three hours but they are feeding him within an hour and a half. So, OT also thinks that his tummy might be feeling full still and making him gag these last two days. They'll decrease the time of feed slowly and hopefully he'll start feeling hungry enough to bottle feed. We'll see....we just have to take it day by day and not rush him. Everybody is saying "he is the boss" so we'll leave it that way. I'm also adding a picture of the first outfit he was able to wear. It was the same day they started introducing the bottle. Thanks everyone and please keep praying that his new heart comes soon. Even though he's doing great, we never know what each day can bring. We're going to cherish each day we have with him.
I also want to take this time to get all of you to say a prayer for the Petska Family. Their son Braden had HLHS and had gone through his surgeries and was doing great until I found out today that he unexpectedly passed away two days ago. Lois, (grandma) thank you so much for your uplifting words after reading my blog (when I first found out of our son's diagnosis). We pray that you and your family have the strength to get through this difficult time. {{hugs}}.

Isaac Update-Sugar Fixed

2009-03-16T14:10:00.002-05:00

So, after Isaac's feedings have gone up to almost 2 ounces, they were able to take him off the dextrose drip. They are still checking his sugar levels just to make sure, but they have said that he is doing fine. Now we have to worry about his feeding. He is still getting feedings by NGT and it seems that when he is moved around during his feeding, he'll spit up some of it. So, doctors are not really sure what to do about his feedings. Hopefully soon we can get him to bottle feed. That's what I'm worried about at the moment. More bad news is that they have found bacteria growing where his picc line is, and so now that line has to come out. Yesterday, his nurse put an IV on his foot, so that will be how he gets his antibiotics. His nurse today told me that there is also talk of moving him to the step down floor (15th floor). I think its great in a way especially because we can stay with him 24 hours but also scary because its a private room where nurses have more than two patients. If he gets moved, a parent has to stay with him 24 hours...and its understandable...I wouldn't leave him by himself for hours at a time. I'm not really sure how the system up there works. But anyways, we are still trying to find out when he can be put back on active on the list. And of course, we'll let you know when he will be. Please keep praying that his infection will go away soon and that as soon as he is back on active for his new heart to come along. God Bless you all!

Isaac Update-Low Sugar

2009-03-14T11:56:00.004-05:00

Houston, we have a problem...it turns out that Isaac might be hypoglycemic. We won't know for sure until they up his feeds and take him off of the dextrose drip, but I'm scared for them to even try to take him off the sugar. Last night, while we were in there with him, he started stirring and it looked like he had hiccups but it turned out that when we opened his blanket his whole left arm was twitching. Doctors and nurses came to check him and not even a minute before that started, they had checked his sugar level and it was pretty low. So they gave him some sugar water in his mouth and they upped his dextrose drip. Whithin about a minute, his arm stopped twitching and he was fine. They checked his sugar level again a few minutes later and it was back to normal. I'm thinking that this is exactly what happened a couple of days ago when his heart rate shot up. When the doctors made their rounds this morning, they told the nurse that when his feeds are increased, then they might take him off of the sugar. I'm scared to see what might happen. I think that because I'm borderline hypoglycemic and my family and Ernest's family has history of diabetes...I think he will be hypoglycemic. I think that because they are almost feeding him normal feedings. But you know what...if he is, I'm okay with that. Giving him sugar is an easy fix. We'll be talking to the transplant doctors very soon. Reason why is because we found out the infection is a common skin infection that he got from the iv line that he had on his thigh. They took that out earlier this week, but he still has the picc line on his left arm. They've taken cultures from that line also and it grew positive the first time and since today its negative. He'll be on antibiotics for a few more days. We want to find out from the transplant team about when he can be put back as active on the transplant list. We'll let you know when we find out. Please keep praying for a heart! God Bless you all!

Isaac Update

2009-03-12T16:40:00.003-05:00

Update from Below: Ok, so we still don't know for sure what caused the high heartrate, but the doctor says that he does have an "ugly bug." He's got an infection...but they don't know what kind yet so they don't know if they are treating it with the right antibiotics. Also, since its unfortunate that he's got some kind of infection, he is not active on the transplant list until it is treated. Please pray that he gets well soon and back on the active transplant list. Thanks everyone.

I know its been awhile. Well, I would've liked to say that he's doing wonderfully except something unexpected happened today. A couple of days ago, he started running a low grade fever but they thought nothing of it. For the past couple nights it got just a little worse, so they drew blood cultures. Ernest called this morning to check up on him before I was able to get there.....they told him he did come out positive for an infection so they started him on antibiotics. They've also gone up on his feeds (through a small tube in his nose), and they were about to move him down to the 4th floor NICU. So, I got there and they told me the same thing, but I noticed that when I was looking at him, he was shaking or shivering...I don't know. Then, he woke up all of a sudden and his heartrate shot up to above 200. It really scared all of us. While his HR was still up there, the doctor came to check him out. He said that sure it wasn't good for his HR to be so high, but there could be a number of reasons. It could be that he's got the infection, he could be in pain, his glucose was also low (although I think his HR would be down...don't know), but then it also might have something to do with the coronary issue. They drew more blood cultures to make sure there was nothing else going on, they did an EKG, an XRay and also drew blood for a cardiac enzyme test. They are still waiting on some of the results to come back at the moment. I'm more worried if its something to do with his heart. I'm hoping that its one of the other issues I mentioned above. I'm trying not to worry too much. Obviously the doctors aren't too worried because they are planning to still move him to NICU tomorrow.

So, since I haven't updated in awhile, here is where we stand. Tuesday afternoon, his breathing tube was taken out. Because his vocal cords had been irritated from the tube, we still couldn't hear him cry. They also took out the chest tubes (left there after surgery for any extra fluid drainage)... so more and more is coming off. Yesterday when i came up, they had taken out his pacer wires and his foley (pee catheter). All he had left on him, was the nasal cannula for the oxygen (which was and still is on low settings), the heart monitor wires of course, the cuff for blood pressure and the pic line on his arm. So, because there was nothing much on him yesterday, we were finally able to hold him! You can only imagine how excited we were! I might post the pictures of us holding him when I can get the pictures downloaded.

Today, its a roller coaster! I'm so scared of what the doctors might tell me. I wish his heart was here already. I don't know how much more OUR hearts can take. I don't know how parents can do this on a daily basis for many months. Its so heartwrenching to see your child so helpless. I'm still hoping that we did the right thing.

We also want to thank everyone for all their thoughts and prayers everyday. Please don't stop praying! His heart is out there somewhere!!!! We've also been asked what people can do for us everyday. We've talked about it and what we would really love is maybe some signs or banners to help decorate his drab room. Especially now,.. we need our spirits lifted. Again, thanks everyone and God Bless you all!

He's Opened His Eyes

2009-03-07T14:58:00.003-06:00

Great News! We came in this morning to see how Isaac was doing.....and he had his eyes open! We were only able to see him at first for a few seconds because they were about to do an echocardiogram. We were so upset thinking that he wouldn't be awake by the time they finished. It took about 15-20 minutes for them to finally call us back up again. We went back up to see him and he was still at least alert. I'm so worried that he is still in pain though. I stayed there for a long time holding his hand, and singing to him. It broke my heart so bad to see his eyes tearing up knowing he can't cry with the tube in him. The doctors have said that they will probably try to extubate him tomorrow. That means they're hoping to take him off the breathing tube...and that means he'll be able to cry. Its so hard to see him like this but I haven't seen my kiddo awake since this past Monday. That means his heart must be doing really well. We've come back down to the waiting area to hopefully let him heal and rest. I really can't wait to see when they can take out all of these tubes and catheters, but I guess I really shouldn't rush....I'd like for them to keep a close eye on him still. So anyways, I wanted to let everyone know that they say he's doing great. I can't wait till they extubate him tomorrow. I can finally hear him cry again. Is it weird for me to say that! Please keep praying for his new heart to come along soon!!!!! God Bless you all!

At the moment, Eli is having another day out with Melody. She took him to go see Hotel for Dogs. I really hope that he has fun because he's been at the hospital more than any normal kid.

Surgery Day

2009-03-06T13:01:00.003-06:00

Great news is...Isaac did great through the whole procedure! He went in at 8:00am and we have just spoken to one of the doctors about 10 minutes ago. He said that the stents went in just fine, they are comfortable with the way they placed the bands and now they are just taking final pictures and fixing to close him up. I want to thank everyone for their thoughts and prayers at the moment, but this is only the beginning of a long journey. We still have to pray that a his new heart comes along pretty quickly. I'm hoping and praying that we don't have to wait too long. Hope everyone is doing well and may God bless you all!

Isaac is on the List

2009-03-05T21:07:00.004-06:00

Great news! We have just found out that Isaac is now on the heart transplant list! So that means, that between now and his surgery tomorrow, they could find a heart for him and he could get a transplant instead of going in to do this surgery. Yay! You never know...our chances might be good! Please pray! God bless you all and thank you so much for your prayers.

Isaac Update

2009-03-05T11:52:00.007-06:00

So very sorry everyone for not keeping this updated like I should. Everything has been happening in the past few days so fast with no time (barely enough time to eat and sleep). Thank God for my mom being here to watch Eli through all of this. Melody is also here and as we speak she is at Chuck E Cheese's with Eli. I feel so sorry for the little bugger being cooped up at he hospital all of these days. This is really his first real day out. Hope he has fun.

So anyways, I know I was supposed to update on how the procedure went the other day, and because I couldn't get online, we tried to call as many people as we could. Well, so he did great during the procedure and came out fine, but bad news just kept coming from the results that they got from the tests. What they found was of course that he still has and underdeveloped left ventricle, but with an abnormally big coronary artery with many branches. After the procdure, the doctor's consulted with us and it was decided that the normal Norwood Procedure was no longer a good option because of the large artery and one of the valves that was completely closed off. So the cardiology team met before they met with us the next day and told us of a surgical procedure called a Hybrid Norwood. Not many have been done in this hospital but only because the Norwood has really worked for them and also because Isaac is their first case with Hypoplastic Left Heart and this abnormal coronary. From what they have told us, this Hybrid procedure is less invasive than the regular Norwood and also will be less risky for Isaac. It will be done by a team of catherterization doctors and of course cardiac surgeons. They do not have to stop his heart and put him on bypass, so that makes me feel a little better. This procedure will be a bridge to get his little heart working a little better because now he will need a full-fledged heart transplant. We were heartbroken listening to the doctors telling this to us, especially since the newborn hearts are a little harder to come by, but....we have faith! We know Isaac is strong enough to get through this surgery and we know that God will give our little angel a new heart. I know there's reason for us coming to Houston and everything just falling into place at the right moments. And we know that even a transplant is not a complete fix, but we will do everything in our power with God's help to keep Isaac healthy. Like the doctor's have told us and we understand is that we are basically just trading in a whole set a problems for another whole set of problems. The reason why they say this is because we have to always watch for organ rejection, lifelong medication, and many many doctor's visits and procedures to make sure his new heart is still working for him. The very best news that we've heard is that because he is still so young and his immune system is still building up, he has an even better chance that his body will take this new heart better than if he were older. Right now, they are thinking that his first surgery will be tomorrow. I know its coming close and we are all super scared but "the sooner the better." They are keeping him pretty stable at the moment, but I really hate to see him like this. He's got so many wires coming from his skin that there's no skin to touch on him. Since the heart cath was done, they have been keeping him sedated off and on. He came out of the heart cath with a breathing tube through his nose. The next day, the plan was to take it out because they had told us that he was doing most of the breathing on his own. So they tried this for about half of the day yesterday, he was doing fairly well (not great), so they put him on a little bit of oxygen. He had a few apnea episodes where he stopped breathing for a few seconds and made his heartrate drop, but he recover it on his own. Well, last night, mom and I were up there with him, the doctor came by to check on him and as he did, Isaac had an apnea episode. Immediately, he said "he's not breathing", and flicked Isaac's little foot. As he did before, he recovered on his own, but they told me the breathing tube would have to be put back in. I broke down....I was almost sure he could do this himself. I hat that he has to use it. With the tube going down through his vocal cords, he can't cry and a tube down your throat will make you uncomforable, so they have to sedate him most of the time. Myself, I hate sedation, but the nurses have told me that its for his own good. It'll keep him from getting his heart and lungs worked up again. He needs to save his energy for his upcoming surgery. The other thing I hate is that since the heart cath, they really haven't let him wake up. I want to see those beautiful eyes again. He needs to know his mommy doesn't he? But I understand....he does need his rest. He'll be able to open those gorgeous eyes soon enough. With all the doctor and social worker consults, we try to stay with him as much as possible. We touch him, talk to him, hold his hand, and rub his head. I know our touch is important to him right now, and we'll keep doing it until they tell us otherwise.
For now, please keep Isaac in your prayers. He really needs this new heart and prayers for a new heart is especially what he needs. God Bless you all!

Please Pray for Isaac

2009-03-02T16:19:00.002-06:00

I just wanted to let you know that Isaac in in the process of a procedure called
a heart catheterization. Within the past few days, they have run many tests and
thought that it was in his best interest to have this procedure done before his
surgery. They have found an extra blood vessel connected to his coronary
artery. What they want to do is take better pictures to see where it is
connected and if they can fix it before his surgery. They want to plug that
vessel during the procedure, but before they do, they have to find out whether
doing so won't cause anything else to go wrong. They took him in at almost 3
and have said that they will update us every hour. We still haven't gotten any
word, but I know all is well. Please pray for Isaac. Pray that the procedure
goes well, that they find this vessel and can plug it without any other
problems. Thanks everyone and God Bless!

2 Days Old

2009-02-28T20:43:00.007-06:00

So Isaac is 2 days old today and getting more handsome by the minute. I forgot to post how big (or how small) he was born at. He was 6 lbs 7 oz and 19 1/2 inches long.

We have spoken to some of the doctors that have been looking after Isaac. Basically, everthing is the same...nothing worse, and he is very stable right now. The team of doctors will meet on Monday to appoint and schedule his first surgery. Could be early or late next week. I'll keep everyone posted.

Great news is ... I WAS FINALLY ABLE TO HOLD ISAAC FOR THE FIRST TIME! It was great...I really didn't expect to get to hold him. He's already got so many tubes and wires, but hey we'll take all we can get. Holding him really seemed to calm him down. He was so peaceful and that seemed to keep ME at peace. As you can imagine, it was an emotional moment...especially for me. I held him for almost two hours (as much as they would let me before his next feeding). Ernest was able to just hold him also. Like I said, for the moment...we'll take all we can get!

I'm posting one more picture, because he's showing his features a little more.

Our New Bundle of Joy

2009-02-26T22:09:00.006-06:00

Isaac Anthony Lopez, born on February 26, 2009 at 2:59PM.

Sorry for the late update. I was supposed to have been induced yesterday morning but they had no rooms available. So they asked me if I wanted to go in at midnight and start the induction. We got to St Luke's at 11:00pm and we were finally able to get a room two hours later. They didn't want to start the induction process until later in the morning so they got me started on Oxytocin at 4am. I came in and was already having contractions and dilated, so it made it a little easier to get my contractions closer together. Everything was going well and smooth until I was fully dilated, but Isaac was not going down low enough. So I started freaking out when the doctor started talking about a C-section. I've never had any surgery done in my life and I was so scared. I asked them whether they were going to put me all the way under, but they said the epidural was enough to get me by and that Ernest could be right there by my side. We got to the operating room at 2:30pm and all was over by 3:00pm. So I thought everyone might like to meet Isaac. At the moment, he has his own ICU room at Texas Children's Hospital while I'm recovering at St Lukes. Once I'm well enough, I'll get to go finally see him. I was only able to hold his hand for a brief moment right after they cleaned him up and made sure he was stable in a ventilator. Daddy and some family have been able to go and visit him, but Eli cannot go into ICU until Sunday. He has seen pictures of his little brother though. So, as I was saying...I'm proud to introduce Isaac Anthony Lopez.

Isaac's Upcoming Arrival

2009-02-04T21:52:00.002-06:00

Well, we're in Houston now! I had my appointment this Monday, and was given a date of when they want me at the hospital for induction....February 25th. Less than a month away and Isaac will be born...can't wait! I mean, I can wait especially because of the circumstances, but we are so ready to meet him.
Our apartment?...its okay, but I wish it was better. Its not really bad or in a bad neighborhood, I just hate where our actual building is located. We're in the back of a complex and have to almost walk in the dark to get to our apartment. I've got VERY limited access to internet, so it may be awhile before we get to update anything else. For now, this is all we know! We'll try to keep updated as much as possible.

The Move: Less than a Week Away

2009-01-26T22:35:00.005-06:00

We can't believe that its come up so quick. We haven't even finished our packing. It just really seems....unreal! There are no updates except that of course we'll finally be moving this Saturday (January 31). We're blindly moving into our apartment...we've seen pictures of the complex, but to me, its still not good enough. I'm hoping that the complex is okay. So far, its great that we only live 5 minutes away from the hospital itself. It's gonna be a lot easier to take the train rather than pay almost $15 a day for parking. My next appointment is on the 2nd and hopefully we'll get closer to our date of induction. Its hard not being able to plan without any dates. So, we'll let all know when we hear any kind of date, even if its just a probable date. Stay tuned! Right now, we're just trying to get all packed up, and ready to move.

glitter-graphics.com

First Trip to Meet the Doctors

2009-01-02T15:05:00.007-06:00

Hi Everyone,
I know its been awhile. We just got back last night from Houston. We're all glad to be back home. I better suck in all the West Texas air that I can get. Looks like we'll be in Houston a little more than I expected. We got there Monday because my first appointment would be the next day at one (Tuesday). We woke a little early figuring that maybe we would beat the traffic, but to our surprise, we left at 11:30 and got there at noon. An hour early! I was actually surprised that we got there that fast. But anyways, we met with the Pediatric Cardiologist that would be taking care of us and she did another echo cardiogram. What was really funny was that this doctor knew the doctor that had done my first one in Odessa. She trained her and as a matter of fact, the next day I learned that she taught and trained most of them around this area and surrounding states. I know we're in good hands. After the echo, we sat down with her and she again confirmed the diagnosis. She did paint a clearer picture of what would happen during all the surgeries though, but same as you would find online. The only other difference was that all babies born with this are different. It turns out that straight hlhs is where the left side did not develop at all, and Isaac seems to have a partial development of the left side. Still not enough to ever work correctly, so she told us in any case they all get treated the same. She also let us know that nothing had changed, which is good and bad. It's bad of course because its still a defect and good because no other complications developed and Isaac is still a candidate for the surgeries...at least the first one. We spent a good long 2 hours or more with the cardiologist getting our questions answered. Despite her not giving us too much hope but telling us how it is, we still think we're in good hands. She answered all of our questions. During that time, Bryan was nice enough to watch Eli for us. I think Eli had fun...not sure about Bryan yet. They played video games, read books, and I don't know what else. THANKS BRYAN! So anyways, after speaking with the cardiologist we met with the nurse that will hopefully be taking care of all appointments and other questions we might have. That took another hour or so. Needless to say, we didn't get to eat lunch until 4:30 that afternoon. I'll never start off an appointment without eating. I'm glad Eli had his pop tart for Breakfast! The nurse told us that we'd probably have to come back a little later this month to meet with my OB unless she could pull some strings and have someone see me the next day. We begged her to try and get me there the next day. We went back to Bryan's apartment and the nurse called us about 8:00pm telling us to be there at 11:00 to meet with my OB. We tried going to the zoo after we ate, but they were closed by the time we got there. Eli was upset!
The next day was a little more productive. They did a sonogram to confirm that everything else with Isaac was okay. Thankfully, it is...he is growing otherwise very normally. It seems like the sonogram took longer than the echo did. Eli got to see a little of his brother. We met with the high risk doctor and he didn't meet with me very long. The nurse said that it was good he didn't because "we don't want to impress him." If we did, then there's a problem. He told us that with this kind of lesion in the heart, there wasn't too much to worry about in the obstetric view. I should be normal and them not worry too much about preterm labor. After finishing the sonogram, which we are upset about....realized we didn't receive any pictures, we met with my OB. Great doctor. He talked to us for a long time, even about nothing at all. I'm just glad that we liked him.

Finally, after that appointment, we were able to eat. Well, Eli was so stuck on going to the Zoo, he was driving us nuts with his whining. So, we thought to go ahead and go and eat there before they closed on us again. He had a lot of fun, although we were all upset because by the time we were able to get to the monkey exhibits, there were no monkeys there. Even though, my feet hurt and I felt extremely tired, I think I was a good sport....I didn't complain but I was feeling awful. We left after closing and of course I fell asleep in the car.
We got to the apartment and I rested a little longer and then we went to eat dinner. After eating dinner, we went to Bryan's parent's house. He had told us before that they never had to worry about leaving for a fireworks show on New Years or 4th of July. I was a little skeptical, but he was right. Midnight rolled around, and all the sky was lit up with fireworks. It was so pretty. People in that area must have spent thousands of dollars on fireworks. Glad it wasn't me!! So, we left back to the apartment about 1, fell asleep, woke up at about 9 and left back to Midland. Like I said, I'm glad to be home...for the moment. We're still waiting for my nurse to call and let me know when my next appointment in Houston will be. That'll be the day we temporarily move too. Moving....that's another story for a later day. This blog is a little too long.

First Doc Appt in Houston

2008-12-28T00:46:00.005-06:00

Houston, we have a problem. The Lopez family is on our way. We got a call from Children's Hospital last week a few days before Christmas. They set up my first doc appointment with the pediatric cardiologist and the OB that will be seeing me while I'm there. We're leaving Monday morning and my appointment is on Tuesday. I'm kind of nervous! I can't wait to get there and they tell me that the docs here made a mistake. I would throw a party!! So....not much else to say about that. I'll keep everyone updated on what they tell me at this appointment.
Hope everyone's Christmas was as good as ours. We all made a killing on gifts...especially Eli. Its sad to say, but this may be his last really good Christmas in awhile. I guess it all depends on the expenses coming with Isaac's surgery and all. I don't mind the sacrifices that I have to make but I hate that Eli's Birthday and Christmas' might suffer. No telling though...we'll just take each day as it comes. So anyways, I'll list a few things that Eli received for Christmas......My Real Projects Toolbench, a VSmile console, Vsmile Pocket, 7 games for his Vsmile, a candy crane, etc, and Santa brought him a Thomas the Train set. I received a watch, some makeup, the Twilight book, a couple of gift cards, and a mini camcorder. Ernest received a windbreaker set, a watch, a pocket knife, and a gps unit. I have to say that the GPS will help us while in Houston.
Oh Yeah, I forgot that I found this poem online....really true so far. I'll find some way to maybe post this poem somewhere to be seen all the time. It gives plenty of hope.

The Day I Became a Heart Mother

One day my world came crashing down,
I'll never be the same.
They told me that my child was sick.
I thought, "am I to blame"?
I don't think I can handle this.
I am really not that strong.
It seemed my heart was breaking.
I have loved him for so long.

I will not give up on this child.
I will listen to your advice.
I will give my child any chance.
No matter what the price.
I will learn all that I need to help my child thrive.
I'll even use that feeding tube.
My child must survive!

Will he need a lot of therapy?
Will he gain the needed weight?
Please God, help me do this.
I will accept our fate.

When the monitors beep at night, it serves as my reminder.
How many parents would love that sound.
Tomorrow I will be kinder.
As another Angel earns his wings,
I run to my child's bed.
I watch him sleep for quite a while.
I bend down and kiss his head.
I cry for the parents whose hearts have been broken.
I look to You wondering why?
Oh Lord, I just can't know your ways....no matter how I try.

And yet, I trust you hold his life, and guide us through each day.
My mind says savor each moment he's here,
but my heart begs, "PLEASE let him stay"!

From pacing the surgical waiting room, to sitting by his bed.
From wishing for a good nights sleep, to learning every med.
From wondering, "will he be alright?", to watching him reach out his hands.
With every smile my heart just melts, despite life's harsh demands.

For all who see that faded line.
I look to them and smile.
You see my child is loved so much.
I would face ANY trial.
That scar I trace with my finger (It's the door to his beautiful heart).
God must have known how much I'd love him (Just as He loved him from the start).

A heart mom is always a heart mom.
Now wise beyond her years.
For those who have angels in heaven,
Our hearts share in all of your tears.

Every day I will try and remember,
I was chosen for him (and no other).
I will always embrace that beautiful day.......
When I became a "Heart Mother".

- Author Unknown

Isaac Update

2008-12-22T16:03:00.003-06:00

Hi everyone,
After much contemplating and research, we have decided to have me deliver and have Isaac's surgeries in Houston at the Texas Children's Hospital. One main reason for asking my doctor to refer us to Houston was because I read that this center is the third best in the nation in the Pediatric Heart Center falling right under Boston and Philadelphia. If we can have one of the best centers take care of my son, and best of all, still in Texas.... count us in! We'll be there!
I want to take a few lines here to thank Bryan for letting us stay at his place for at least the month before I deliver. Eli's so excited, because he loves Bryan. I know a three year old may not understand that his brother is "sick" and that the doctors need to take care of him, but he sure did understand that we would be living with Bryan for awhile. After telling him we were going to Houston, he seemed kinda iffy until we mention about staying with Bryan. He giggled, and said, "Oh, Bryan... OK!"
So I just wanted to keep everyone updated on where the surgery would take place. We'll give more updates after our next appointment with Dr Blanco in Odessa. Take care everyone...and thanks for taking the time to read our little rantings.

Diagnosis: HLHS

2008-12-17T17:57:00.005-06:00

This blog will be mostly dedicated to my unborn son whom in utero has been diagnosed with a rare congenital heart defect called Hypoplastic Left Heart Syndrome. This information comes from the Hospital that will be taking care of my son's surgery a few days after birth. Its one of the best informational site that I found regarding HLHS. It gives hope because I know they will do their best to take care of him.

Dec 11, 2008, will probably be a day that I will never forget. It all started with a routine visit to my OB in November. We were scheduled for a 22 week sonogram and were excited to find out it was a BOY! He's taking measurements, but the baby was in such a position to where all we could really see was his spine. I was scheduled two weeks later for another sonogram. Doctor said it was only to get the rest of the measurements that we had missed that day. So, here we are again two weeks later. Measurements on the sonogram were going just fine until he said that he couldn't get a good view of the four chambers of the heart. He then said that he wanted to schedule me with a Perinatal OB specializing in high risk pregnancy. This all happened right before Thanksgiving and they couldn't get me scheduled in with him until after Thanksgiving. I didn't think I could wait that long. We called that doctor's office and said that we'd be there at the drop of a dime if someone were to cancel. They put us first on the list. So, here I am waiting and a couple of days before Thanksgiving, the doc's office calls to tell me that they have a cancellation and I have to be there within two hours. We're on our way to see the specialist. It takes for what seems like days to go through all the new patient paperwork and we finally get into the sonogram room. The sonographer is complaining of the way the baby is positioned (baby seems to be a contortionist with his legs behind his head)and so he calls the doctor in to see if he can maybe make the baby move. No such luck, but he does try to get some pictures of the heart. His expressions aren't very good and we get worried. After minutes of trying to get a good picture (so he said), he tells us that we are going to have to be scheduled with the Pediatric Cardiologist (flies in every month for him) to do an echocardiogram on December 11th. You can't imagine how long those two weeks felt for us. We prayed and prayed that nothing was wrong and that it was just the way the baby was positioned.

Dec 11th finally came and here we are again anxiously waiting in the lobby. The cardiologist was not there yet. We waited for about 20 minutes and she finally showed up. We finally end up in the same sonogram room that we were in two weeks ago. She warned us that she gets very quiet while she is doing her thing and will be giving stats to her assistant while doing so, but promises to tell me everything afterward. It took about 20 to 30 minutes for her to finally finish. She turned on the lights and said "I'll be right back, I'm going to go draw a picture of what I see for you to understand it better." My heart sank! I knew something was wrong for sure. Again, waited for another few minutes before she came back with her pictures. To make another long story short, DIAGNOSIS-our son has HLHS. She explained that he will have to have open heart surgery right after his birth, one at a few months of age and hopefully the last at about 2-4 years of age. You might click on the link to give you a full picture of what will happen during these surgeries. I guess my reaction was a little delayed because I started crying midways through her explanation. I just can't imagine a child having to go through this. Why can't it be me? What did I do wrong? Why my child?
I knew from reading the information given for HLHS, that my son does have a pretty slim chance of living and that three options they give parents are 1)compassionate care (take him home, give him comfort and wait for the Lord's hands to take him), 2)a three stage surgery to reroute the blood flow and such, or 3) a heart transplant. She is telling us that the three surgeries are the greatest chance of survival because without them, he had no chance of life. A transplant for a newborn is usually out of the question because of the sparcity of newborn hearts. We tell her "okay, we'll do anything and go anywhere." The doc's assistant tells us my next appointment is on the 31st and they will give us more detailed information at that time. They did say, that by January we should be going to Dallas to meet the OB that will be taking care of me there, and the surgeon whom will be taking my son after delivery. We'll have to stay/live in Dallas for a month before I'm due to deliver in case there are any complications. That's all we know for now. I'll give updates as we get them. They will be taking care of him at the Children's Medical Center in Dallas. I've done my research and know that they are one of the best hospitals that specialize in children's hearts in Texas.
So in a nutshell, we're living in a nightmare and I'll never be able to wake up and know things are fine. I realize that we have to be strong for our son and have faith that he will be a survivor. We have to give him that fighting chance. His family is counting on him. I'm really glad she didn't mention compassionate care or pregnancy termination. I think I would have punched her. I had been thinking to myself that I would never just let my child die. It would be kind of like letting him fall into a pool of water and just watching him drown. He picked us as his parents for a reason. He knew we'd give him a chance in this world. I think we are also really blessed that they caught this early. Many parents do not know that their newborn may have this condition and they take him home thinking things are fine until sometimes its too late. The baby's heart is too weak to withstand any surgery.
My first son, Eli is waiting for his little brother. I can't fathom the thought of when we have to tell him that his little brother is very sick. Although I'd like to give a lot of my attention to this baby (even though not born yet), we have to realize that we have an allergy-stricken, but otherwise healthy 3 year old that needs just as much attention. He's is what keeps me going and I would never neglect him. So, I'll pretty much be talking about him in this blog too. I could never leave him out.
Even though they (some) may not let us know, I know our family cares. Maybe they just don't really understand the extent of what is to come. Maybe this will help them understand all this complexity.

Isaac's Heart Matters

To Honor our Donor Family

Endoscopy and Colonscopy

Admitted to Children's Covenant in Lubbock

Still in Houston

Heart Cath Biopsy

Its Been Way Toooooo Long!

Waiting for the New Year

Update 1

*Crossing Our Fingers*

He is out!

UPdate

A Big Day!

When it Rains it Pours!!!!

No Significant News

Update after Procedure

Back to Houston

Happy Halloween

Quick Trip to Houston

A Quick Trip

HOME SWEET HOME!!!!

Happy Labor Day

6 Months Old

Can't Wait....

Thursday Clinics

Doing Phenomenal

Home Sweet Home

ARE YOU READY TO GO HOME?

Means of Communication

4 Months Old

Look Mom, Nothing's Holding Me Down!!!!

Happy Father's Day!!

Bragging Rights

"The Floor"

Post Transplant Update

Recovering

Angel Heart Birthday

Out of Surgery

2:10AM UPDATE

1:00AM UPDATE

Ramblings

UPDATE 3

Update 2

UPDATE 1

THE CALL

All Smiles!

Picture of Isaac, Dad, and Eli

A Marvelous Day

Back on Active

Headed in the Right Direction

A Bump in the Road

Rollercoaster!

Better Days are Coming...

A Little Better Every Day

Rough Couple of Days...

Cath went well

Back to CVICU

Prayers for Heart Cath Procedure Monday and HAPPY EASTER!

My New Room

Isaac is 1 Month Old!

Isaac Updates

Another Heart Cath

Elated but also Heart Broken

Isaac Update-Sugar Fixed

Isaac Update-Low Sugar

Isaac Update

He's Opened His Eyes

Surgery Day

Isaac is on the List

Isaac Update

Please Pray for Isaac

2 Days Old

Our New Bundle of Joy

Isaac's Upcoming Arrival

The Move: Less than a Week Away

First Trip to Meet the Doctors

First Doc Appt in Houston

Isaac Update

Diagnosis: HLHS

Crossing Our Fingers