We thought today would be the day, but we're not home yet. And it sure looks like we won't be until the end of the week. Henry has had some setbacks over the weekend, including low grade fevers, the recurrence of a slight rash, a big bout of vomiting and several days of . . . hmm, I keep trying to think of the most blog-friendly way to say "diarrhea," but there doesn't seem to be one. Feel free to leave suggestions in the comment box. ;)
The vomiting/rash combo gave me flashbacks about Day One, and I had a hard time holding it together when the resident said, "But he looks fine right now!" Some day I'm sure I'll blog all about the frustrations of our first week here, but the theme of the week was, "He's fine, Mom! It's just a virus! He'll turn around by tomorrow! You'll see!" That is, until Day Six when he was moved to the PICU. I know it's unlikely that the cycle would repeat, but after what we have been through, it was hard not to let anxiety get the best of me. The good news is that the vomiting, rash and fever are gone. Which leaves us with the . . . watery stools? At first, we suspected that it was caused by the thickener we were adding to his formula (a necessity because he has been choking on thin liquids, probably as a result of being intubated for so long). We tried some cereal as a replacement thickener, which seemed to cause or at least exacerbate the vomiting. So we discontinued both thickeners and gave him a break from the bottle yesterday.
In the meantime, he was scheduled for a modified barium swallow/videofluoroscopy this morning, which showed exactly where the liquid goes when he takes a bottle. They offered him several different thicknesses to see if he could safely drink any of them. Unfortunately, Henry aspirated every one, which means that he will be off the bottle for 6 - 8 weeks. I knew we would probably come home with the ng tube, but I never imagined we would have to go so long without offering him anything by mouth! After that, he will need to have another swallow study to see if there has been any improvement. If not, we wait again and try again, putting several weeks in between each swallow study to avoid overexposure to radiation. Good times.
Trust me, I know I should just be thankful he is here. I am grateful for the miraculous recovery he is making. But this setback was hard to swallow. No pun intended actually, but it seems a fitting end to this post.