It even makes it worth the crappy night's sleep I got! And it nearly didn't happen, so that makes it that much more of a relief. Despite keeping Ainsley home from school and limiting our exposures by keeping her home she got a low temperature this week for no apparent reason (no real sickness in the family, she'd not been sick and limited exposures) and I thought we might have to reschedule. Her throat was red so I took her in to the pediatrician and they checked her tonsils, which though quite red, were not as bad as they looked to me. They did a throat and trach culture which we later found were negative for nasties. She had fluid in her ear, but that's typical for her. These sleep studies are booked out 6 months so you really don't want to reschedule. Luck was on our side and though her temp came back Sunday afternoon it was still under 100. and her breathing and sats seemed normal so it was okay to go. Looking for that brief moment of perfect health to coincide with a procedure, test or surgery is like waiting for a blue moon.
We did a lot of prep to ensure that this sleep study went well and that she would wear the CPAP so they could evaluate whether it's a legitimate option for her.
You'd think we were leaving for a week. It's so great to be so loved!
It was almost like going to stay at a hotel. Okay not quite.
She got to watch Tinkerbell on X-Box while she was hooked up. I was too busy completing pages of paperwork and answering questions to get pictures until it was done.
The stuff they use.
She was tired so after she was wired she was ready to sleep. The bed was large enough that I could get in with her and hold her hand. That helped. As you can imagine she didn't love all these wires. She only cried a little while they were put on. But then she fell asleep fairly easily. The bed is about as comfortable as a hospital bed.
Things went about how I expected. With the cap on her trach she has obstructive sleep apnea, and I knew this from many home trials over the past 3 years. At this point it is the primary reason that she still has the trach. After 20-30 minutes she started to breathe heavily, and her chest would heave trying to get enough breath (retractions), she would rouse and breathe better. Then she would fall back asleep right away and the process would start over. They wanted to let that continue so they could gather test data. I think she understood why she was there and kept the cap on for a full two hours, which was what they wanted. At home she would just yank it off and throw it.
After the 2 hours, they put took the nasal prong out and put the CPAP mask on to start the CPAP portion of the test. I wasn't able to get pictures, but this is an old picture so you can see what the mask looks like.
Here is where they keep some of the equipment.
Last winter she'd been able to sleep a whole nap with the CPAP(capped). This week it actually didn't help her, she struggled to breathe and woke up and I had to remove the cap. So I had a brief panic attack thinking that the sleep study would be done in vain. But after some research I found they'd put her on the lowest setting but they would be able to go much higher during the study. During the sleep study they kept a close eye and ear on her and each time she struggled they would increase the CPAP pressure. I know at one point she was up to 7 (and only on 4.0 at home) although they can't tell me the final results, I don't believe she ever got to the point of needing BiPap. She was able to keep the mask on until 6 am when she signed to me "off". It was 6 minutes until the study was supposed to be over anyway so we took the mask off and boy was she happy! Though it took awhile longer to disconnect everything.
She was so happy and gave me lots of hugs. When we got home she was so happy to see her Dad, brother and sister who were getting ready for school.
It was a successful study, but a really awful night's sleep. I held her hand the whole time and she woke me 20 times. We're exhausted. I think the stress caused her to spike a fever.
Now we just wait and weigh our options which are:
- Do nothing and keep the trach as long as needed.
- Work toward the goal of taking the trach out which means using CPAP for sleeping.
- A cricoid split or other airway surgery, which carries risks.