May 2021 Update

I completely forgot to update on Job's recent surgery!

The surgery itself went really well. He has a lot of scar tissue so there was more bleeding and bruising than the surgeon expected (which ultimately translated to a pretty long recovery pain wise). Job was SO excited going into the surgery (because he hated his NG tube so much). I think the doctors and nurses were pretty shocked by his enthusiasm in the pre-op room!

But Job had a rough time in the PACU (recovery room) as he typically does. Precedex really does a number on him and he didn't wake up well or quickly enough and his blood pressure dropped and he needed blow by oxygen and there was a lot of activity and talk about going to the ICU. I say all of that here, now, because I told most everyone his recovery was "fine". Because it was. We eventually made it up to the floor and he stayed on oxygen and he went home the next day. That fits the definition of fine. But it's a lot of work to get there because it always is. Job never follows expected timelines or outcomes.

And his digestion and ability to control his bladder and bowels have been set back significantly, which is demoralizing to him as a recent "potty training" graduate. And, of course, there's all the school and housework stuff that fell behind, after a mere 24 hour hospitalization, because there's a lot of emotional stuff we all get to work through.

I guess I'm trying to say that sure, it was a simple surgery. It really did go well. But there's such a big cost even for something this small because it's an accumulated cost.

And what I really want to emphasize is how AMAZINGLY well his lungs sound now, since we're just completely bypassing his stupid broken throat and putting fluids directly into his stomach. WE ARE SO RELIEVED! It is GLORIOUS to hear him breathe so well now.

I've felt such relief. Such sweet, sweet relief these last couple of weeks because it finally feels like he's kinda sorta safe now? I still hate the fact that he needs a G-tube and it would have been really hard (impossible?) to bear its necessity if we'd just gone straight to a G-tube in October (ok, or any of the other times it was suggested since May 2016), but wow it's been life changing. Thank you, Jesus, for providing for us in this way!

He's pretty sad to not get much fluid by mouth (he's not supposed to have any but it's hard to have zero tolerance because his mouth feels thirsty and he's so jealous of everyone else) but he also really does recognize how much better he feels now compared to a mere month ago. He's regaining energy (amazing how much better you feel when your lungs can fully fill with AIR) and is sleeping much more safely.

He also officially graduated from preschool at our homeschool co-op (though he missed at least 50% of the class this year) and is SO excited to start kindergarten. He's writing letters constantly and making lists and stories on whatever scraps of paper he finds all day long. He wants to learn how to read so badly and asks me to help him do so daily.

I have to hold my expectations loosely, which continues to be really hard for me to do, but we're starting to feel more hopeful that he can breathe more safely and be less susceptible to respiratory infection and begin to gain weight again and rebuild his energy and endurance.