[To recap, he got the tube on December 17th after his second round of vocal cord gel injections this fall and his third failed VFSS (swallow study), proving he was unsafe to swallow even thickened liquids safely.]
Emotionally he's been less frustrated this last week as he was the first week, but we haven't advanced the rates of his feeds so it's felt that every day is focused on getting adequate liquids into him. What time is there for anything else?
But I had an encouraging appointment with Transplant Nutrition on Wednesday and we brainstormed new strategies for his feed doses and rates and I was feeling encouraged that we could speed up his rate so he wouldn't have six 45 minute feeds a day (a totally unsustainable schedule that I have been quite anxious about)!
But then on Christmas Day he not only threw up a significant volume but his NG tube came up, almost all the way out. My mom and I pinned him down while he screamed and screamed and Seth threaded it back in. Traumatic for all of us, but ok, just a fluke.
Until it happened again Saturday evening. And this time we couldn't get it in. He screamed himself to sleep as soon as we took a break and I held him while he napped. When he woke up we tried again but he was having some respiratory distress type symptoms, so we decided to just pull the tube. He'd already gotten his required fluids for the day so we planned to just offer applesauce and yogurt (and any solid foods he wanted) until we placed a new tube in the morning.
He had a pretty rough night last night, though, coughing in a new way, and he looked pretty out of it this morning when he woke up. He didn't have a fever and his respirations and heart rate and saturations were all ok. His cough still sounded concerning, but then he didn't cough as he took a nap from 10-11:30. But when he woke up at 11:30 he looked terrible. Ezra started screaming and screaming for us to take him to the hospital. Even at 9 years old Ezra has seen Job in respiratory distress often enough that he knows what to assess for and when a hospitalization is necessary.
We were in the car already and so it was a pretty rough drive with Ezra screaming, Isaac sobbing and Job coughing and hacking and gasping. Ezra had been suspiciously calm and trusting all fall as Job has been in and out of the hospital and I've wondered and prayed about this anomaly even as I've been thankful for it.
I'm typing this up as he sleeps after he screamed himself to sleep after going through a hospital admit, a new NG tube placement, an IV placement and a nasal cannula for oxygen. I've been slow to say anything about Job this fall. I'm kind of tired about talking about him because most of all I'm tired of him having issues. I want to "just" post a pretty picture of us doing something festive, all dressed up, with perfect decorations like it seems everyone else is doing on social media. That's easier. Less messy. It's what I want my life to look like this week. But the more serious this round of issues gets and the longer it all drags on the more we're coveting prayer. And that means reaching out to people and actually posting this and finally responding to some texts/emails. So here we go.
And here's our best attempt at a pretty picture for Christmas:
Even though this photo from an hour ago feels more representative of the last few weeks (and, obviously, of today):
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