Friday, July 22, 2011

C-Pap Titration

Nolan and I headed up to Buffalo Children's last night for his fourth sleep study: this time a C-Pap (Continuous Positive Airway Pressure) machine would be titrated during the study.

Our favorite sleep study technician was only in for the evening, so another technician did most of Nolan's hook-up and study. Still, the respiratory therapist extraordinaire prepared several "prizes" for Nolan's departure the following morning, and set him up with some fabulous Lightning McQueen sleeping accessories.

The hook-up started shortly thereafter. The amount of wires that is involved is pretty impressive: a partial EEG array, 2 EKG leads, 4 leads on the legs to detect movement, leads on the chin and near the eyes to detect an open mouth and eye movement.

Nolan was absolutely brilliant during the hook-up of the leads. This is his fourth time, and he has an experience book that helps him understand what will happen.

The nasal cannula always makes him cry for a moment. He really hates any "tubie" up his nose, but he recovered fairly quickly from that part of the procedure.

Unfortunately, the mask to the C-Pap would prove more difficult for him. He started sobbing when they placed the mask over his nose, even with no air flowing. Once they started the air flow (at the minimum pressure of "3"), he absolutely flipped out. Fortunately, the respiratory therapist had a brilliant idea and snagged a mask for me: I was able to wear the mask and help Nolan through the process of getting it on. We even hooked up the air to my mask, so that Nolan could see that it didn't hurt and wasn't really scary at all.

This worked for a little while, anyway. The airflow does feel strange, and along with the feeling of the mask, was a bit much for an almost-four-year-old boy. There was a bit of crying and a lot of fitful sleep in the early evening.

They titrate the C-Pap machine by increasing the air pressure until the apneas and hypopneas disappear. Because the respiratory therapist cannot give me any information, I have no idea what Nolan's final pressure was. I do know the air was blowing quite a bit more forcefully by the end of the study.

The little guy barely slept at all until 4:00am. We had to replace his nasal cannula twice, which required removing the C-Pap mask and then reattaching everything. At some point, I realized he had wet the bed, which required removing and reattaching the leg leads as I changed him (note to self: future studies will be done in a Pull-Up).

He was mighty glad to get everything off in the morning, and we headed home with his trademark goopy head and "powers." I should get a call from the Home Healthcare Company (HHC) within the next week or so: they will arrange a meeting to pick up his machine and masks. I'll find out the pressure level settings at that point, since the machine will have to be set and ramped up to the correct pressure.

I have my fingers crossed and prayers said that the C-Pap will work to stop the apnea!


Herding Grasshoppers said...

Nolan is such a trooper. Heck, YOU are such a trooper!

Does he like astronauts and space stuff? Maybe you can "sell" him on the mask if he thinks he's an astronaut :D

TheSweetOne said...

I'm so glad you posted all this. We have a consult for Lauren on the 3rd. Now I know what kind of information I should be asking about!

rouchi said...

Its overwhelming to see what this lil fellow and you have to go through!Some days you really wonder why life just couldn't be a bit ordinary.He is a brave soul of a brave mum.More power to you both!

xraevision said...

Aw, poor little guy! That is a LOT of wires. I am amazed at how cooperative Nolan was. My X would not have tolerated any of that for a minute, not with any kind of bribe. Well done to both of you. The photo of the two of you all geared up is priceless.

YaelandJake said...

I have a 2 year old son that needs cpap and rips off his mask at night, has Nolan been keeping it on? If so which mask and any advise to offer?
Thanks so much,

YaelandJake said...

My 2 year old son, Jake, has had 4 studies too and he needs bipap. I cannot find a mask he will tolerate, how is Nolan doing? Any advice on the subject would be great!

dlefler said...

Hi YaelandJake,

C-Pap is so very hard to adjust to. We finally came up with a solution that worked for our son, Yael- we chose a full-face mask and he tolerated that the best. We were obviously concerned about vomiting into the mask, but that has never happened and we keep a monitor on. Nolan is now 5 1/2 years old and can take the mask off in case of emergency, too, so that has made it a bit easier. You can see him in his "big" mask here - it looks confronting but this was the best mask for him (the Respironics FitLife full-face):

Adjusting to C-Pap was one of the hardest things we've had to do. We're attempting a second supraglottoplasty in the hope that we can abandon the use of C-Pap. He is adjusted now, but it took a solid 3 months of struggles every single night. Major hugs to you - it is a very difficult challenge with toddlers.