Ryan had surgery this morning to change his G button (feeding tube into the stomach) to a G/J which means we can feed him into his stomach or into his jejunum (small intestine). The surgery took longer than expected because the tube kept coiling; in fact it took the surgeon six tries to get it in place. She said it may not stay in the small intestine and could end up back in his stomach but the only way we will know is if he starts throwing up again. Please pray it stays in place or we will face another surgery! Three surgeries and four hospitalizations in the past five months is plenty for all of us, and we’d like a break.
I am working today which was not fun as I came to work and my son was in surgery. It was harder than I expected, but thankfully Ryan is resting comfortably and Travis is taking great care of him. It’s a very hard balance trying to decide when to work and when to take off. I don’t have an unlimited number of sick hours so I have to be very careful how much time I take off for Ryan’s illnesses always wondering if something may be lurking around the next bend. My heart is so torn wanting to be at the hospital but I have to be at work. This is exactly why Travis stays home with Ryan during the day – so when he is hospitalized or has to stay home from school, someone is always available to be with him.
Ryan’s feeding pump will be hooked up soon so we can get some nutrition back into him. We have done this before and while it’s not fun to deal with the pump beeping all the time because the tubing gets kinked so easily, it gives Ryan the nutrition he needs. I can’t remember if I said this in an earlier post, but to give you an idea of how much he has been struggling with digestion, he weighed 100 pounds just a few months ago. Last weekend when he was hospitalized, he weighed 89 lbs on admission. Then just seven days later when we took him back Saturday, he weighed only 83 lbs. We did everything possible to keep him hydrated and fed but it still wasn’t enough. His liver enzymes among others were elevated on admission but after 24 hrs of fluids, they went back down to normal. I have no idea how long he will be on 24 hr a day feeds, but we will do it as long as necessary. And we may end up keeping him on the night time feedings long term just to make sure he gets the nutrition he badly needs. With his large intestine already having lost all its peristalsis, I’m nervous as to whether or not his stomach will work again. It’s a guessing game and we have learned to be very flexible with things.
I am so ready for a break. The last few weeks have just been crazy – not bad, but very busy – and I feel like I haven’t had even a minute to just stop and breathe. I’m feeling fried and hope things settle down with this new normal. We’ve done the feeding pump before and while it’s not fun, it’s something we know we can do. Once again, we are finding a new normal. The kids missed out on our tradition of putting all the Christmas decorations up the Sunday after Thanksgiving and we didn’t get to go buy our very first real tree. I know they are disappointed, and I hate that they have been so worried for their brother. Hopefully things will settle down once we get Ryan home tomorrow. Hopefully Tuesday we can decorate the tree, listen to Christmas music, make a good meal and have some much needed family time together.
Thanks again for all the prayers. We appreciate you all! I hope each of you had a wonderful holiday; in spite of the stress we certainly did with lots of family in our home.