Last night was a HUGE success. Alyssa tolerated a feed for 8 hours overnight and it was all completely digested. When she woke up at 7 they decided to let the feed run for the hour and a half we had had it shut off last night. She wore that. As crappy as it was. It was actually a huge insight into something we may have never figured out otherwise. Remember how the emptying test came back normal? Well, she was asleep for nearly 80% of the time she was in there. Asleep she was digesting fine. Awake? A completely different story. So, today we started her on a muscle relaxer with the hope that it will relax her stomach enough when she is awake to let it do it’s thing.
Alyssa was in a great mood for the better part of the day. You could tell the pain was lessening and she had a bit of nutrition in her system. They decided to try the first day time feed. 8 ounces over the course of an hour. I immediately thought “ha! yeah…right” but figured we had to have a jumping off point. Well, needless to say that ended with her bed needing a change of sheets. I cannot tell you the last time that she consumed 8 ounces in an hour was…of anything. It was pretty much the equivalent of giving a cheeseburger to an anorexic. LOL. So, back to the drawing board. The huge blessing in all of this? Her doctors listen. I know it sounds silly and inane, but I have a friend across country who is in a constant battle with doctors who want to think that their way is the best way. Ms. T has said on more than one occasion how we know Alyssa better than anyone else could ever try to. So, we talked to the doctor on call and sent some texts to Ms. T and made the plan to cut her feedings down to 4 ounces over an hour to start and see how she did. The muscle relaxer wasn’t given until after this feed. So, it wasn’t completely tolerated but she did keep down about 2 ounces. Then, the night feeding…oooh the night feeding. Repeat of last night. Stuff before sleep… backed up. Except tonight we knew what to expect. She started gagging a bit and we sat her up right away. Managed to get her calm with the help of our good buddy morphine and she conked out at about 1030 PM. On that note? I’m so wiped right now I am conking out with her with the help of my good buddy Tylenol PM to help me unwind real quick like. The nurse and I talked and she is going to leave us alone for as long as possible. The good thing about her needing morphine to calm down was that the nurse won’t have to flush her IV again until 6 am 🙂 … so we shall see…
Speaking of see… here are a couple pics from today 🙂
And I figured it would be good to share a pic of the temporary tube 🙂 This is about 36 hours post-op. As you can see it is a very minimally invasive procedure 🙂 For those of you unfamiliar with Alyssa’s skin… the darkened lines are not from the g-tube they are from her underlying condition of incontinentia pigmenti. This particular tube is called a PEG tube and it will be replaced in about 8 weeks.
And with that I am off to bed! Here’s hoping for a restful night and a good first partial day at home!