So Sorry! It has been far too long since I have talked to you all! I am so sorry about not writing.
On one hand, I have been very busy (and tired), but on the other hand. Not a whole lot has changed.
What I am about to tell you will seem like a lot, but remember, all this has taken place over the vast span of time since our last update.
So, about a week ago (give or take a few days), little man finally came off the ventilator again! Over the next couple of days since then they were able to drop his oxygen to 21% (room air). As of yesterday, they were able to take his nasal canula off and let him breath on his own. He was doing GREAT for about 3 1/2 hours until we started his care (take temp, change diaper, things like that [this is what we call "doing his chores]).
He has also pooped from his stoma 3 times now. I know that poop talk is never pleasent, but this is a HUGE step for him. This means that everything is starting to work somewhat normally again. Also when we changed his diaper yesterday, there was a small little poop in there as well. That is also good in the sense that it means the lower part of his intestines is still working (this was/is a small concern of the surgeons).
We have been able to wean him off his Fentanyl and get him onto Morphine and Versed. The drawbacks to this is that he has become quite the little drug addict, literally. He is extremely irritable without the Fentanyl, he is going through some withdrawls, he is in a little more discomfort considering they only give him the Morphine as needed. The whole process is extremely hard for him, but will be better in the long run.
Last thursday we spoke with his Cystic Fibrosis doctor, very nice guy. Very informative! I think we will really like working with him. He is the only CF doctor in the entire area, so he will be Ethan's doctor for a very long time.
The CF doctor also came in yesterday and spoke with both us and Ethan's Neonatologist and mentioned that maybe it is time to start getting him used to the fact that either formula or breast milk is the way to go. His CF doctor will have to give him some enzyme beads by mouth to help his system digest his food. They are thinking they will do this via an extremely small amount of applesuace.
Well, I am sure there is more to tell you, but my overloaded brain just petered out. So if there is more, I will write you all again. If not...then I won't! Makes sense, huh?
Thank you all for taking the time to read about our little boy! After this week, the updates should come a little more regularly as our lives will begin to slow down again.
Take care for now!
- Kip, Tia, Riley, and Baby Ethan -
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