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Thursday, August 27, 2009

6 Months Old

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.


Tuesday, August 11, 2009

Can't Wait....

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!


A Dedication to the Angel that gave me my new heart!

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