Slumber Party!

Aaron's slumber party was last week.  He actually did sleep.  I didn't. 

This was a BYOE party:  Bring Your Own EVERYTHING.  Even though you stay overnight in the hospital, insurance considers it to be "outpatient."  That means, just like when you go to your pediatrician for an ear infection, you're expected to bring everything your child needs for the time period.  This is what Aaron's needs look like for an 8 pm to 6 am study. I'm grateful it's an "off" month for his inhaled antibiotic, or we'd have two more meds in there.

Let me tell you, hooking this kid up was funny.  TONS of wires were "glued" to his body.  They measure EVERYTHING:  heart rate, breathing rate, the amount of work it takes to breathe, eye movements, leg movements, brain waves, everything.  He thought the whole things was a riot, and was soooooo "helpful."  He was having a party!










Fortunately, he was also exhausted.  Just after they turned out the lights, he went out, too.  Me, well, not so much.  There were all sorts of noises and it was kinda warm and I also had to do his 2 am meds and nebulizer treatment.  Oh, well.  They weren't studying me and I knew I'd get a good nap once I got home.

Wait, how am I supposed to grab the wires?

They changed his vent settings dramatically.  For pretty much his whole life, he's been on what's called "volume control" settings.  With that, the vent pushes in a certain amount of air and the resulting pressures depend on how flexible the lungs are.  They changed him over to a "pressure control" setting where the air pressure remains the same and the volume of air depends on how compliant his lungs are.  Theoretically, the pressure control should be better for him, especially with his increased needs.  Possibly it will be, if we can get the right settings.

6 am.  Time to wake up.  He's not so sure.

I keep trying to tell them that Aaron does much better asleep than awake.  He needs less oxygen, less support from the ventilator, less intervention.  I guess that's backwards from where the majority of patients are.  Most of them need much more help when asleep. 

Yeah, the new settings didn't work so well.

We changed him over on Friday afternoon, after the pulmonologist had a chance to read the study.  In the back of my mind was, "is this good timing?"  Someday, someday I might learn to listen to that little voice.  Yeah, Friday afternoon, three-day weekend (Monday was Pioneer Day, a Utah holiday), might not be the best option for big changes.  The hospital doesn't like to discharge on Friday or even Thursday with big changes like putting a child on a ventilator for the first time.  They want to make sure the patient does well for those first couple days at home while it's still normal business hours. 

He's not a fan of early mornings.

He did okay at first, but in the early morning hours he started needing more oxygen while asleep.  By the time the nursing shift ended at 8:00, he was at his baseline for late in the day and well above where he should have been for sleeping.  By 10:00, I gave up.  He was on the emergency tank at 12 liters and we were struggling to stay about 80% on his oxygen.  Even more telling, he wasn't interacting much at all.  He'd slept all night, but was exhausted and not smiling.  I gave up and called the hospital. 

Fortunately, I really know my ventilator.  The on-call doctor wanted to switch him back to his old settings.  Really, there was nothing else we could do.  This doctor didn't know Aaron, has never even consulted on him.  We knew the old settings had worked, they'd worked for years.  He was concerned that I might not be able to change them back and suggested if I was at all uncertain we really needed to come to the ER and have them changed there.  I'm really, really glad I've researched and played with this vent as much as I have.  I've even been known to show some of the newer respiratory therapists how to run it and changed settings.  So I had no problem at all switching back.  In fact, by the time we were done with the phone call, it was done. 

I don't know what happens next.  I've got a call into his doctor.  We'll see if they try again with higher setting or just leave things alone.  I'd really like to be able to make the newer mode work.  It should be so much better for his lungs and his heart.  He has a heart cath coming up on August 16th, and using optimal vent settings would give us the clearest picture of his heart health.  It's not good, it won't ever be good, but it would be nice to see exactly where he stands. 

This week is another quiet week around here, but I think it's our last one.  Starting next week, we have follow-up appointments for his scoliosis, his ears, and the heart cath, all on different days, of course.  We need to get his eye glasses and his new hearing aid.  Plus there are two soccer tournaments coming up and school starting four weeks from today. 

Speaking of school, we are, yes, once again, looking for a school nurse.  It would be one to two days a week, from about 7 am to 4 pm, and he would be the only one the nurse would be responsible for.  If you know someone with an RN or an LPN certificate who wants to spend their day with this cutie, please let us know!! 

"What hath night to do with sleep?"

John Milton Paradise Lost