Well, we have had enough progress to get you all updated again. So, even though he reacted poorly to the pavulon they gave him (which I was told from someone outside of the hospital that the reaction was normal), he has recovered quite well. We feed him through his G-tube about 29CC of formula over 4 hours every 6 hours (4 hours on, 2 hours off). The other day we started him on his enzymes again because he had been tolerating his feeds so well.
By the way, Ben! All the prayers are working...HE POOPED! lol
Ok, so what I mean by that is that after his reanestamosis, we were afraid that either more of his small intestines or his colon might not work and they were going to have to go in and remove more things. They did start to give him glycerine suppositries to kind of jump-start his blowels, but in the end he can poop and not need any help. This is a MAJOR step to him coming home. This is a key role in determining if he would need more surgeries or not. Because all this has happened, the feeding, the pooping, the enzymes, we can now start talking about going home. And today, we kind of did!
We are still very hopeful for Christmas, and now it looks like it might very well be. He is still on his Hyper-Al (hyperalbumin, his nutrients), but we are slowly wheaning him off of that as well. Once he is off of that, we will keep the IV in and flush saline through it for a couple days to make sure he can sustain himself without the Hyper-Al. If he can show us progress with that, then they will take out his IV (PICC line) that is in his head.
We have already gotten him off of is oxygen sensor since he was proving to us that he can get upset with out desatting (is that a word? the process of not going into a state of desaturation? what-ev!) Now if he desats we just wait until he starts turning blue. Sounds crazy, I know. But since he doesn't really do that, being able to take him off all his wires, and tubes and such makes us feel like he is a big enough boy to start taking care of himself.
the other day we had a charity group called "Now I Lay Me Down To Sleep" come in and do free family photographs with us. We should be getting the pictures back here in the next couple weeks. When we do, I will post some on here so you all can see. It is not our first family pictures, but they are our first professional family photographs. I can't wait to see how they turned out!
We have started oral and nasal stimulation (tastes and smells). It has come to our attention that babies that are in the hospital for long periods of time with nothing going into their mouth can cause them to have what is called an oral adversion. We know of a young boy who is 8 years old with his G-tube still in because he has never been able to get over his oral adversion. Also, we know of another young child who was in the NICU for 11 months, when he went home he could not stand the smell of the aromas coming from the kitchen...his mother moved the stove to the front porch and now cooks outside. We don't want either of these to happen, so we have started giving him things like bubble gum, peppermint candies, pretzles, all kinds of things for him to suck on so that he can get used to different tastes and smells...and he LOVES them!
Ok, so I kind of need to get back to work, but that is for the most part what we have been able to accomplish over the past couple weeks or so. He is doing so very well, thank you all again for all you have done for us!
Until next time, take care!
- Kip, Tia, Riley, and Baby E -