He’s Okay

His lungs are still not perfect, so he had a little trouble getting his breathing back after the breathing tube came out … which means one more night in the PICU for observation.

Our usual pre-op family portrait.  The other families waiting give us major side eyes when they see us do this.  Yet another reason we NEVER wait in the family waiting room.
Our usual pre-op family portrait. The other families waiting give us major side eyes when they see us do this. Yet another reason we NEVER wait in the family waiting room.

When we wheeled off the elevator into our old 9th floor PICU stomping grounds, there were hugs all around with our favorite nurses and docs.  Surprisingly, ICU Dad and I both twitched when we heard the once very familiar sounds of the ventilator alarms.  Which made me happy — it’s nice that we’re not used to them any more.

Before this surgery, I pulled some ICU Mom sh*t like no other.  The general peds surgeon responsible for his case was being harassed by about 20 people throughout the hospital for weeks before this day.

My theory is this:  I don’t want to cause J any suffering or pain above what is absolutely necessary for his treatment.  So when we have to do a surgery, which we did today, we make sure EVERYTHING that needs to get done is done all at once.

The hernia surgery and jaw appliance removal would normally not be combined.  But J doesn’t need any extra intubations & time under general anesthetic, so I asked the surgeons talk to one another and figure it out.  And they did.

I mentioned that he was going in for surgery to his ophthalmologist at our follow up last week; he got added to James’ doctor list for today so that he could conduct a proper post-op exam of J’s eyes.

When the Broviac came out (wahoo!), the downside is we lost our only reliable access to James’ blood.  Now, every needle in that child will feel like a personal failure to me.  So last week, I emailed his HLH doctor and his immunologist and made sure that all necessary bloodwork was taken from the Broviac before it was removed (we haven’t officially seen the immunologist yet, but kids with Kabuki are known to have immune system issues and I correctly guessed that he would want blood for his initial assessment of J).

Hi Guys! I'm sleepy.  Where are w….oh, you have GOT to be kidding me.
Hi Guys! I’m sleepy. Where are w….oh, you have GOT to be kidding me.

This is what people mean when they say you have to advocate for your child, I suppose.  Anticipating needs as best you can based on doctors and PubMed and Google, acting like a quarterback for all of the specialists, and pestering until they listen and respond.

Luckily, J is at a hospital where the docs are completely receptive to my annoying nagging (ICU Dad, you could learn something…).  In fact, normally I get a pat on the back for asking questions and making these kinds of multi-specialist plans.  They understand that with a kid like James, there are about 20 doctors with some responsibility for him, but none who really see the big picture.  It’s my job to connect them all.

Today we checked about 5 things off of James’ list.  *Knock on wood* J should be done with surgeries until next year.

I totally just jinxed us by writing that.

Jinx double jinx.  That works, right?

Thank you for all the lovely messages from all over today.  We read and appreciated every single one.

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