Isaac Update

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!