His Birthday is Coming, But He's Struggling

A little less than two weeks from his birthday, and we're back in the hospital again.

In the PICU.

By ambulance.

With lights and sirens.

Yeah... 

May is over, school is over. He had his dance festival. I LOVE these! If you want to see authenticity, watch the kids in his school. There's no pretension, no hiding feelings. These kids can move! And they have so much joy to share.  

Then it was project time for me, trying to get some things done before he actually got out of school. You know, in between medical appointments and stuff like that.

We had an old swing set that blew over and needed replacing. I also have a small picnic table my dad built several years ago that's seen a bit too much love. So I set to work painting a new swing set (that isn't quite set up yet) and refinishing the picnic table.  I think it turned out well, and Aaron enjoyed the last few days of school.

But meantime, he seemed to have picked up some kind of bug. What kind? Who knows! We handled it at home this time.  

Or so it seemed.  

Seizures are still a "thing" and we've increased his Keppra to help battle them. They're a less vicious, but still, they're happening, at least a few times a day. His special needs ped wants to try to (very slowly) reduce his neurostorming med, Clonidine, so we started that on Sunday. For the next two weeks the plan is (was) to reduce from 400 mcg to 350 mcg/day. And then of course, we were just getting over his cold. 

So what happened? Who knows exactly. Probably a combination of all of the above. 

But on Sunday he struggled more with his oxygen, and this was before any med changes.  By Sunday evening he was running a low-grade fever.  Monday and Tuesday were kinda a swing-ish days.  Oxygen was high and then low, and then high again. Temperature was normal, not normal, and normal.  He seemed okay. 

On Monday we did a virtual appointment with neurology where the PA and I decided we wanted to get a 72-hour VEEG (EEG with video feed) to determine if what we're seeing really are seizures or something else before increasing meds again.  

All in all, pretty routine stuff.

Wednesday afternoon . . . not so much.  

He struggled, really struggled.  Michael needed a ride to a high adventure drop-off, just a mile or so away and at 4, I wasn't sure if I could take him or he needed to call for a ride. Aaron was super high on his oxygen and not wanting to keep his sats up. I had already increased his pulmonary hypertension inhaled med to sick settings and given a lot of albuterol. He pulled his act together and I ran Michael over.

About 9:30-ish, he started alarming again. William asked if I needed take him in and as I got up, I said, "no, I don't think so, maybe just down to American Fork to get an x-ray if anything, just to make sure." Then I rounded the corner and his sats were at 51. 51%!!  Yeah, that got my attention.  

Grabbed the bag, grabbed more meds even though he'd had them not long before. Dumped more respiratory meds in while bagging him and getting him stable-ish.  He was working sooo hard to breathe! I yanked his onesie off so we could see it better. Lungs didn't sound that bad, but still... Obviously we had more than we could take care of at home.

Once again I found myself calling 911. By the time they got there, he was into the low 80's (which is fine for him) but only if I was actively squeezing the bag. 

Normally (okay, normally when needing to be bagged) we can bag him up and then just leave him on the bag and he breathes well enough on his own. Not this time. If I even paused, he dropped. Even after getting him higher, on the short trip out the door (where it was too tight to be right next to the gurney) he dropped back into the 50's. 

No bueno.

So we came fast, lights and sirens and the whole shebang. 

On a fun note, there's an ER doc that I've served with on a council for several years, and he was on when we got here. Even funnier, although we've worked together for quite some time, I think this is the first time he's actually taken care of Aaron, although he's known about him! 

X-rays looked good once we got here.  Labs were actually okay, too. But still, we've got the fevers and the significant needs that brought us in. He's come down on his oxygen but the fevers are stubborn and not moving much at all.  He's slept almost all day (which might be influenced by the fact that we didn't get to bed until about 4:30 or 5).

Since the plan was to try to get a VEEG anyway, they've got that going, too. He's trussed up like a Thanksgiving Day Turkey. 

The thought is that the seizures may be an side note to what's going on but probably not influencing things much. 

More likely, it's a combination of the pulmonary hypertension and neurostorming, and it will be up to Aaron to determine when he's done with those. In hind sight, I should have recognized earlier that it might be the weaning process that was setting things up. I should have been more aware and tried to work with the fevers before they increased. 

In class, we were encouraged to help clients not "should" on themselves. But in practice, with myself, it's a lot harder. I keep thinking, "I should have this, I should have that" and it's hard to let go of that. In some ways, it helps to prevent future mistakes, but somehow I need to let go of what I did (or didn't) do. 

I encourage others to give themselves grace, to allow that they did what they could with the knowledge they had. When we know better, we then do better, but we can only accomplish what we are capable of at the time. 

It's easier to do that with others than with myself. They tell us that to be effective therapists, we have to be willing to do our own work. Sometimes (often) I've got a lot of that to do. It's hard to leave those "shoulds" in the past where they belong and just take the new understanding to the future. 

But he will be 13 on the 13th. His golden birthday. 

For the boy who lived. 

"...may you live all the days of your life." 

~Jonathan Swift