We got the results back from Sam's sleep study and it is not good. He had 164 obstructive apneas, 136 hypopneas, 2 central apneas, and 11 mixed apneas.... And although we were pleased that he slept,he did have prolonged periods of wakefulness during the study that the doctor who read the study felt resulted in an underestimation of the severity of his apnea!
We received the results last Wednesday and were immediately given a priority appointment with ENT for last Friday. It was assumed that he would need his tonsils and adenoids taken out. If only.....
It seems his tonsils are smaller than normal and no other issues were seen. We still have to get an x-ray of his adenoids but the ENT did not think there was an issue. She feels it s more like muscle tone. It may even be because of the near drowning! She felt it was like a CP type issue.
We've also noticed that his CP has gotten worse in his legs I don't think I've gone into details on here but Sam's legs are so stiff and he stands with them bent. this has come on quickly over the past year. He has seen orthopedics and is having therapy specifically addressing this issue
So we are FREAKING out here! He was given a prescription for an apnea monitor on Friday today is Tuesday and we still do not have one. I actually had to fight to get the prescription. The ENT suggested it but since she is not seeing him again (no need) then I had to get his pediatrician to write an order after 3 pm on a Friday. Our doctor was not in but did it anyhow. He's a great doctor!!! Our insurance approved it by 6 pm.... since then we have been lied to by companies. Friday night a company said it was on the way to our home with a monitor. They never came! So now we've changed companies....still waiting!!!!
We borrowed a machine but it is not quite what he needs but it does alarm if he gets too low on his oxygen. For the time being Sam sleeps with Mama. He is quite pleased with that LOL I've not got a lot of sleep but last night was the best. I believe I slept through some of his lighter alarms. Sometimes just hearing a beep with make him take a breath but it doesn't wake him up.
The ENT is not sure what will happen now. We have an appointment with a sleep specialist on Tuesday and we hope we get some answers. They will probably do another sleep study and try both a bi-pap and a cpap machine. We do not know if Sam will adjust to having something on his face. The ENT fears that neither machine will completely help him and he will still have to wear a monitor.
To say we are concerned is an understatement. I've been afraid for Sam at night for awhile. Not to be overly dramatic but I've felt like death was near to him!!! I know that sounds crazy but it's true. Sleep Apnea has always been a concern. He wore a monitor until he was 7 years old- the apneas he had back then were central apneas meaning the brain forgot to tell the body to breathe. But he outgrew them. We did try to do a sleep study in December of 2016 but he wouldn't sleep. I don't know if anything would have shown up then or not. Maybe this is just his CP getting worse as he gets older. Sam has always been my mystery baby! So many medical oddities that no one could ever explain to us. thankfully he outgrew alot of things but now it seems he is growing into other issues.
I'm not an easily discouraged person but I feel discouraged right now We are still looking for that 4th nurse for Selah. We have three committed and wonderfully loyal nurses but we just can't seem to keep that 4th nurse's position filled. I'm beyond tired of dealing with our agency over issues. They probably cringe every time I call as I cringe when I have to call them! Sometimes I despair at the thought of trying to keep her home after our nurses retire.
In my life I have so much responsibility. Most of the time I can deal with it. But the WORST part of being a mom with special needs kids is having to deal with a bunch of idiots (companies, providers, health care providers etc) that have no emotional attachment to Selah or to anyone. Healthcare was a calling but I don't see that holding true for many people involved in the healthcare field anymore. I have some great doctors that we deal with that see my kids as people and we've been blessed with great nurses but it is very rare to find a provider (insurance, machines, supplies, nursing agency, pharmacy etc) that really cares. We had the very best pharmacist for awhile. I could count on that guy for everything. He moved on and started his own pharmacy that our insurance does not work with as of yet. I don't expect special treatment but I EXPECT PEOPLE TO DO THEIR JOBS!!!
So this has been a stressful few weeks for me. It can only get better I hope!
****just as i was finishing this blog I got a call from the sleep specialist and they've moved up Sam's appointment to Thursday morning. i am so glad!!!