It was fun to enjoy his happy smiles all by myself. I do get a lot of alone time with him, but it's usually dominated by appointments, not playing. I'm trying so hard to interact with Job as I would have with Ezra and Isaac at 16 months old instead of treating him like a little baby still. So I tried to ignore all of the medical things swirling in my head and we sat and talked about all sorts of fascinating things and read up on Seattle Parks history and the old Naval Base on Sand Point.
It's hard to actually forget the medical stuff, though. I had hoped that, if Job made it through his first two surgeries, we would just get to enjoy toddlerhood. Instead, he's staying healthy enough to stay out of the hospital but not healthy enough for his team of doctors to just forget about him for a while. In fact, we're adding new specialties!
I wanted pulmonology to come up with some magical solution today, though of course they didn't. They want a CT scan of his lungs as well as some additional testing but everything they suggested must be done under anesthesia so we'll probably wait a few months and do a cath plus their recommendations.
Almost three weeks ago Job had a repeat VFSS (swallow study) that showed no aspirations or penetrations! So we started weaning him off of his thickener that we have been adding to his bottles since February. We went from 1 packet for every 4 oz down to 1 packet for every 7oz, and in a few more days I was going to take it away entirely. So exciting!
But pulmonology said no, go back to fully thickened feeds. Despite such a good study, the risk is too great and his oxygen requirement is too confusing and too concerning to take him off thickener.
As with so many of these things (being on oxygen, adding a med and going up to 4 med times), thickening his feeds isn't that big of a deal in the grand scheme of things. One year ago when Job had just been moved up to the CICU after two RRTs, I sat in his hospital room wishing we could be home again, no matter how much work it would be to care for him outside hospital walls. So, perspective: we thicken bottles again! I'm going to grieve and then preach to myself until I find contentment.
I sat and summarized Job's medical history for pulmonology, hitting all the highlights because Job's collection of notes are... Overwhelming, shall we say. It's easy for me to do, because, as I told the pulmonology fellow, knowing this medical history is one of my full time jobs. I guess I gave up studying the history of Job Carr to now study the history of Job Parkinson.
I haven't gone through Job's history month by month like that for a long time and as hard as it is to recount his complications one after another, it's good for me to do so. We've been working through the Psalms in church and I've been struck again at the repetition in them.
Up until a year ago, I would be quick to roll my eyes because how many times do I need to read that God brought the Israelites out of Egypt? But I've been learning that I DO need to hear it over and over again. I need to frequently revisit each of Job's trials so that I can marvel at how we have made it through each and every one. Sometimes with deep scars (literal and figurative!), but always through.
Now I gravitate to the repetitive Psalms (the sadder the better!) and find such encouragement (and conviction!). I can't actually point a disgusted finger at the forgetful and complaining Israelites because I rail at the disruption of my plans for Job daily, if not hourly. I don't want to waste all this suffering by complaining and disobeying. I do feel like we're out wandering in the wilderness right now, medically speaking. Out of Egypt, but not in the Promise Land. And I'm tempted to quarrel with God and not trust His provision
"I am the Lord your God, who brought you up out of the land of Egypt. Open your mouth wide, and I will fill it." (Ps. 81:10)
No comments:
Post a Comment