Tuesday, November 18, 2008

Baby Ethan Update - 10/23/08

Hello all!
Again, I wish to thank all of you that visited Baby E last sunday for coming to see him. It was a wonderful turnout, and it meant/means a lot to us that you would take time out of your busy scheduleds for comming to support us! Thank you again!
Well, for some time now our little guy has not been being fed because of some irritation issues with his bowels. They tried to feed him a small amount of food and he ended up bleeding out his little stomas. So we don't really know what is going on there. They believe that only one loop of his small intestines is inflamed (or not functioning properly), so when they go to reconnect him, they will probably cut out that little piece also.
Our reconnection surgery is scheduled for 7:30 am next tuesday (10/28). We don't anticipate that this will be a heafty surgery, but knowing this kid, anything is possible. They will reconnect his small intestines, possibly remove the infected loop, do a Bronchial Endoscopy to look at his lungs and take sampls of tissue and fluid, and circumcise him all at the same time. Wow...sounds like a lot, actually!
So almost every day we have therapy time with him where we do stretches, and coordination things...basically we play with him. We have a neat little mat that lays on the floor, and we have toys and things and he seems to LOVE his play time with...well...mostly mommy! All the nurses say he is a big flirt because he always smiles at everyone, he is so cute! The other day his occupational therapist said that she was noticing that he was laying on his back and deliberatly swatting at his fish mobile that he has hanging over him. She was shocked at how well he was doing because, according to her, most kids his age (who have been bed ridden since birth) don't have the strength to fight gravity and lift their arm up that high for that long. So we were really pleased to hear that.
Last time we spoke I think I mentioned something about possibly moving to Seattle to continue/finish his ICU care. After much consulting, and debating among ourselves, Tia and I have decided that it is in Ethan's best interest to stay here at Deaconess, at least for the time being. If you have no idea what I am talking about, last time I wrote about the "political" things that needed prayer for. Some of those prayers have been answered, but not all...yet!
Well, in any case, I think that is where we stand at this point...I really don't know why I say that. Every time I email all of you, Tia always "reminds" me that I missed something...lol! But that is her job, to keep me on top of things!
Thank you again for all of your support! There is an end of the road out there somewhere.
Take care for now!
- Kip, Tia, Riley, and Baby E -
p.s. I really do hesitate to put this in here, I don't want to leave on a bad note. Tuesday afternoon, Tia and I were in Ethans room. I had left to go get some drinks for Tia and I and noticed that in the room that Ethan was in for the "viewing" they had another baby, TONS of doctors, TONS of nurses, and everything was all draped off. One of the nurses told me that thay had two little babies that were just born (premies of course), and one of them was the one in the room. She was telling me this as I was washing my hands and getting gowned up to go back into Ethans room. After I got back into the room, about 2 minutes later, Baby R's mom came in just absolutely sobbing! I went to her to give her a hug and asked what was wrong, she told Tia and I that as she was getting gowned up, she overheard the doctor in that first room announce the babies time of death. From what I gathered, the baby could not have been more than 1/2 hour old. It made sense to me now why when I went to go get the drinks that there were so many people in the waiting room crying. How devestating for that family! I think this time, you can give our prayers to that family. They need it WAY more than us right now! I tried to ask our nurse yesterday what happened, and because of HIPAA, she could not say anything...understandably.
p.s.s. Two of Ethans roommates have been able to go home. Baby K and Baby Z are now at home with their parents. We are very excited about that. We are friends with Baby K's parents (My sister actually graduated with the mom, so she ends up being a long time friend of ours), and she says that Baby K is doing great. We don't know anything about Baby Z, but our best wishes goes out to that family as well. Baby R is still having a rough go! Every time they get him to a stage that he might be able to go home, he slips back into a stage of intese care. We are really good friends with his parents, and they are struggling much more than us. They have been there since May 15th and there is no end in sight for them. They stay positive as much as they can, which is good. But it is just a mask, and Tia and I can see that!
Ok, that's all!

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