Celebrate

Let's Celebrate a HUGE Milestone!

In 2019, we have had ZERO transfers to Wesley Children's Hospital for emergency care.  (Yes, we were there in January, but that was for a CPAP trial.)  

Lennon's sleep study has been moved to April 17th.  Hopefully we will have more support for him with either CPAP or BiPAP when he's sleeping.  This should also help increase his lung capacity and improve his ability to breathe independently.  We would love to have him less reliant on supplemental oxygen.

The process has been started to get Lennon an adaptive carseat.  He needs a great deal of head support when we travel, so having an adaptive carseat means that positioning will no longer be a struggle. 

I'm really excited to see how long Lennon can go without another PICU stay.  I won't say that these last few months have been easy or worry-free, but it has been wonderful keeping him home.

Picture for attention. 

Check out his new haircut!

Pro-Tip: Low Sat? Check the humidifier attachment.

You all know that were are DILIGENT about checking equipment, watching vital signs, and noticing when things are OFF with our little buddy.

Wednesday afternoon/evening Lennon's oxygen saturation wouldn't stay above 90% consistently.  We checked the probe on his oximeter, changed it to a different spot, and tried it on my finger (where it read perfectly.)  Next we checked his tubing, the flow on his concentrator, the lid on his humidifier, his cannula, his positioning... I think you get the idea.  We had him cranked to full-blast (5 liters per minute) oxygen and finally found a spot on his left side that kept him over 90% most of the time.

Thursday morning, his concentrator was still running at 5LPM, but he did just fine. Nikki was on top of meds, feedings, and treatments.  When he work up from his nap, he went back to the same chaos from the day before.  Not wanting to let him continue to struggle, we called for an appointment, got called back to bring him in ASAP, got transferred almost immediately to the ER, and almost got transferred to Wichita.

So by now, you're probably wondering why we didn't transfer. 1. His oxygen saturation was at 100%. 2. His breathing was improving. 3. His mitochondrial movements were slowing. 4. His seizures were not ongoing. 5. His chest x-ray showed no signs of concern. 6. His bloodwork looked amazing.  He got a 2 hour Argenine infusion (this is one of the amino acids that helps him produce energy) and we went home... where his breathing slowly deteriorated again.

You can imagine the headache I was giving myself.  WHY is he having issues if everything looks ok test-wise.  I was SURE I'd checked all the equipment.  So I started scrubbing, washing bedding, and rechecking equipment. I tried to sleep, but again, I woke up several times to desat alarms.  Around 5 AM dad asks, "Why do you think he did better on the tank than the concentrator?"  "Why don't you put him back on the tank?"  So we did, and what do you know... saturation was at 100%. Even as I backed the flow down from 4LPM to 2LPM, Lennon maintained 98% or higher oxygen saturation.

So I started checking everything again...

Humidifier bottles are attachments that sit on top of the oxygen concentrator. They're held in place by a thick plastic brace and a velcro strip.  Apparently they're very cheap and fragile too.  When I pulled the bottle out to check the connections and make sure that nothing was blocking the flow, I found a small crack. FACEPALM 🙈

Moral of the story- pull the bottle all the way out and check the integrity of the plastic.

I have no idea how it got cracked or how I would have been able to tell the difference but my lesson has been learned.

Can you tell which bottle is cracked? 

Videos for Comparison

 

So, which canister was broken: the top with the green tubing or the bottom with the clear tubing?