The doctors finally started Cael on TPN (IV nutrients). He will be on the TPN over night, then we will try with the formula again tomorrow. We will continue with TPN at night time and formula in the day as long as necessary. We know that once conditioning starts he will stop eating all together, but we will keep trying with the formula as long as possible.
We didn't want it to get to this, but I am happy he is now getting the extra nutrients he isn't getting due to his poor eating.
While he didn't really eat much (only 16 ounces today), I am happy to say that he didn't throw up at all today. Not sure if he is feeling a little better, or if it's just that he didn't have enough in his stomach to throw up. The only thing to doctors could come up with as a reason for him throwing up the past few days is the RSV. Before, he was only positive for RSV when they did the lung wash during the bronchoscope in July. They have checked every week, and this week was the first time it was positive when tested in a nasal wash. Because of that, he is having more mucous up in his throat and nose, which may have been what was making him throw up
They lowered his oxygen last night to 1/8 liter, and all of today his blood oxygen level was up at 95-97%. They also lowered his steroid to once a day a couple days ago, so the fact that his levels are so high is really good news.
The wife of one of the principals of my work stopped by today with lunch and lots of snacks for Adam and me. She brought us so many good things! I still can't thank my work people enough for how understanding they have been through all of this.
I was a little all over the place in this post. Just a lot of little things to report today.
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