This week will mark a full month home with James. (If you are pointing out in your head that he technically had to spend one night in PICU after his surgery last week … don’t be an a**hole).
This is what texts used to be like between ICU Dad and I in January and February:
You see, at that point we really only knew James by his numbers: oxygen saturation (anything above 90 is acceptable), heart rate, respiration rate, blood pressure, ventilator settings. That continued for a long, long time. James’ numbers told us everything — if he was in pain (high heart rate or blood pressure), if he was starting to work too hard to breathe (respiratory rate), or if he was about to go into respiratory failure and need an emergency re-intubation (i.e. the day after he was extubated and sent to the bone marrow transplant floor, only to have his sats drop into the sixties and race back to PICU with the rapid response team to get the breathing tube back in. That only happened once, but damn it was scary.)
Now? Our texts go something like this:
Because I finally have a baby to care for at home, on top of a very energetic preschooler! I don’t have time for this sh*t.
It’s been a busy, stressful, exhausting and wonderful month at home. I’ve shared some of it already, but we’ve had a lot going on in the background.
J is recovering very well from the surgeries last week. There were a few very sad days when he was in a lot of pain and we were all crying, but we made it through them and he’s comfortable again.
Max decided he was ready to be potty trained right after J came home. He was basically like “Guys, I know we’ve been busy the last 6 months, but this is really getting a little ridiculous.” Okay, actually he was like “Mommy, I’ll just wear underwear to camp today.” And I was like “Oh. Okay, then (?)” (As an aside, finally having a potty trained kid is the BEST).
We’ve started looking for a new house, because one month into this apartment with two children … NFW. I know what you’re thinking: what kind of lunatic would want to attempt a move after the year we’ve had? The answer: these lunatics!
James has now been through all of his early intervention evaluations, and we’re waiting for the meeting with the EI program to determine the extent of services James will receive. The evaluations could be viewed as profoundly depressing. But I accept James for whatever he may be, so I’m focusing on what he needs, not what he lacks. (I will continue to repeat that to myself until it’s true 100% of the time.) I’ve started preparing a package to advocate for the maximum resources for James, and I’m definitely going to have my lawyer hat on that day.
As an aside, a tip for any readers who are the parents of complex kids themselves: J’s medical history is REALLY complicated. I got sick of explaining it to every Dr. Tom, Dick and Harry who sees him. So I made up a medical resume for him, with headings like “Hospitalizations”, “Surgeries”, “Diagnoses”, “Current Medications” etc. I update it every time there is a new development, and just keep a few printed out in my file for J. Pretty much everyone is shocked when I hand it to them, but it makes life so much easier for me (isn’t that the most important thing?) and James (oh yeah, also him).
Oh, and did I mention the most amazing one from just today? James laughed for the first time. HE LAUGHED.
Obviously, I cried. But not nearly as hysterically as when he first smiled. J’s not the only one recovering after this month, I suppose.