I just didn't expect to be writing a day seven and eight post -- but it is what it is and we are trying to make the best of it. Things here are just plain old frustrating -- we're not upset with anyone and I'm certainly not upset with Angela but just simply frustrated that her little body is not allowing her to eat. After not tolerating her g-tube feeds, which is the tube that goes right into her stomach we decided that she needed her GJ back. After three separate attempts to place the tube we have had no luck and we are still without the needed J-tube, which would bypass the belly and go right into the intestine. This is all due to her lack of motility in her belly. She has always had bad motility but due to various reason things have taken a huge turn for the more difficult.
Today Angela was officially switched over to the service Gavin was on. Ugh so difficult, yet so needed for Angela. The doc decided to try once again to push feeds though her G- tube. So far tonight it's just not working. She is wretching and when we vent her tube all the fluid just pours out -- her belly is just not working.
We also are going to get with speech tomorrow to look at Angela decline in her swallow ability. We feel she may need to have a swallow study to check to see if she is aspirating her saliva. Difficulty swallowing is to be expected after this surgery but we just need to explore the issue so we can help her to get back on track faster.
After another six IV attempts last night the on-call anesthesiologist was able to place a line. The line is barely hanging in there but we have been told that this line needs to remain as long as possible as there are not many other options that are not more drastic.
Not sure what it looks like for going home. Angela needs to be able to tolerate some kind of feed. I just know she is going to turn around soon. She is feisty and wants to go home just as bad as I do. Thanks so much for all your prayers and support!