Sleep Study and Hospital Stay

Checking out the toys/distractions in the Sleep Study room

All hooked up (the toys came in handy, Jonathan did AWESOME!)

Now the bunny hat:)

Sunday night, Jonathan and I packed our bags and headed to Houston for Jonathan's Sleep Study at Texas Children's. Our nurse was great and Jonathan was so good about getting all those little wires stuck to his head and body. He looked like a little snow bunny once they put his "snow mask" on to keep the wires from coming off. Additionally he had a little sticker under his nose to measure his CO2 output and a pulse ox on his toe to measure his blood oxygen levels. We started the study at 10pm and from there it was a VERY LONG NIGHT. We started the night with zero O2... well that didn't last long, his saturation's dropped. So we put on the nasal cannula and put him on his normal 1/8th lpm, still had some dropping into the 80's, but not bad. However he was having apnea episodes, his body was trying to breath but he'd have to startle himself awake to take a breath. So we upped the O2. His Sat's stayed in the 90's mostly but he was still having a lot of apnea episodes and retaining 50%+ CO2 (apparently normal is 40's and below). So out comes the CPAP and the screaming began... poor kid was SO SCARED, not to mention exhausted and sweating like crazy from all the hook up. It was A LONG night... long story short, I got NO sleep, Jonathan got maybe 3 hours of sleep and had O2 drops into the 20's..... TWENTIES people. They start CPR on people when they drop to the 50's! Needless to say we were admitted into the hospital the morning after the study. Diagnosis: Severe Obstructive Sleep Apnea with some Central Apnea episodes.  

Rest, FINALLY, while we wait, to be admitted, in the ER

 

Playing peek-a-boo in the hospital bed:)

We were admitted and Pulmonary consulted ENT for a possible Tonsil/Adenoid removal surgery. After weighing our options we decided surgery was NOT the best option being that Jonathan is so young and his anatomy is not THAT obstructed, it's more of a "low tone" issue. This same tone issue is the reason Jonathan has trouble swallowing and it's directly related to the malformation of his brain caused by the Chiari. Jonathan's Neurosurgeon Dr. Whitehead stopped by (because he heard we were in the hospital:) he hadn't seen Jonathan since his 3 month check up. Let me just say, I HEART this Dr, he "FIXED" my son and because of that I admire the heck out of him! He stopped by to discuss Jonathan's MRI results from earlier this month. Basically things look good. Jonathan has a C4 level ACM (Arnold Chiari Malformation) but the shut is working well to keep the spinal fluid levels normal both in his ventricles and around his brain stem and spinal cord. There is NO pressure on his brain which means there is nothing surgically that can be done (ie a decompression). However because of the ACM Jonathan's cerebellum, brain stem and spinal cord are atrophied. Apparently this is only seen in 2% of children with myelomeningocele Spina Bifida so there hasn't been much research. We figure this is the main reason Jonathan has such low tone in his upper body and in addition to his eating/breathing issues, still struggles to sit up unassisted and roll over back to belly. Thankfully we DO see progress daily, so although it may take longer, we have faith that these are obstacles he CAN and WILL overcome! 
So in the end... We were discharged with a brand new BiPAP machine (BiPAP is different than CPAP in that the pressure is high on the inhale and lower on the exhale (vs a constant high pressure). A BiPAP can also give "reminder" breaths incase Jonathan's central apnea kicks in and his brain forgets to tell his body to breath. We also, now, carry O2 with us for naps while we are out and about. Hopefully, with all this good rest and well oxygenated brain and muscle cells Jonathan's body will see and feel the benefits!

Home and sleeping sweetly with his new BiPAP:)