So I'm going to give the play by play of the 2013 adjustment to CPAP. (So if you aren't interested please just ignore this post.) Otherwise I'll never remember this and you never know if I will need this information (like if we decide not to go forward with CPAP and then try again in another few years.) Even though this is all recent the days have already started to blend together and I had trouble remember all the different times. This is my best reconstruction.
4/30 Botox injection done. Gave it a week to take effect.
Early May. She had been wearing her cap a lot, but sometimes needed it to be removed if she was coughing, crying or became exerted from physical activity. Although we would replace it, she would sometimes go hours without the cap, or use a valve instead. Post-Botox she's kept the cap on far more consistently.
5/8 Tried sleeping with the cap on. Remained asleep for 2 hours but was loud. An improvement. Normally she would wake gasping for breath.
5/10 Had e-mail conversation with ENT. Asked about downsizing to give her more air space. He viewed video of Ainsley sleeping and suggested a sleep study.
5/13 Ainsley fell and badly cut her lip. She was drooling and had more secretions. Booooo! It took a good 10 days to heal. She didn't eat as much and we had to wait for her to heal to work on the sleep stuff.
5/14 Scheduled sleep study and VFSS. Doctor gave his okay to downsize (even though he didn't think it would help) so we went to a 3.0 trach. After 2 days Steve and I agreed it wasn't enough enough for sleeping(more stirring). We replaced it with the 3.5. I thought I might put the 4.0 back in but never did. A month later we still have oozing of secretions at the stoma.
5/21 She fell asleep on me in the recliner with the cap on and had awesome quiet sleep for a couple hours. The position was awkward and can't be reproduced. We had to go to bed so we don't know how long she might have lasted. Clearly the obstruction is somewhat positional.
5/23 Asked nurses to keep the cap on all day at school since she's been doing so well with it. In other words to make her work through any difficult periods. Hopefully they've done that.
5/23-29 Since she was doing well with the cap we would let her fall asleep with it on and only remove it when she obviously needed it (usually 1-2 hours later.)
5/30 I tried having her sleep without a pillow as a friend suggested. She was on her stomach and slept until 5am that night with the cap on (no CPAP) but complained of a headache when she woke up. (Maybe CO2 retention?)
6/1 Tried elevating the mattress with body pillow for fall protection. Did nothing at all.
Talked to her about CPAP and why we were going to try it.
6/3? Showed her the nasal mask and full face mask. Had her try both. Told her we would try wearing them the next night.
6/4? Put the mask on at bedtime. Required lots of hand holding. She woke several times and was inconsolable at 2 am. Removed mask and told her we'd try again the next night.
6/5 Put the mask on at bedtime she did okay for awhile and then woke again. I climbed into bed with her and she did okay for a few hours but she kept waking upset. I had to get some sleep so we stopped at about 3am.
6/6 I gave her the choice to put the mask on after she fell asleep. We did that about 11:30 and I stayed with her until she fell asleep. She woke upset and stirring at 5am so I removed it.
6/7 Woke at 12 but kept CPAP on until about 3 am. I could tell she was too upset to keep it on.
6/8 Put the CPAP on when we got home. She slept with it on until 2am.
6/9 Had trouble about 2am. I kept the mask on but removed the cap. She slept peacefully with the mask on until morning.
6/10 Put mask on after obstructing(an hour or two). Pulled cap off by herself but happily kept mask on until morning.
6/11 Before bed I asked her not to take the cap off by herself but to call for me instead. Put mask on when she started to obstruct about 1 1/2 hours into sleep. Slept with mask and cap on until 7:45!!!
Basically there were a lot of wakings in the beginning duriing the first hours of sleep that I could hear using the baby monitor so I had to fiddle with the mask and hold her hand until she fell asleep. Gradually this got better and I could leave quicker.
She likes to sleep on her side (and that position is best for obstruction) and that makes the mask dig into her nose a bit. She has a bit of a red mark which I hope won't turn into skin break down.
My plan for the rest of the week is to continue putting her to sleep with her cap on and put the CPAP on after she starts to obstruct. Friday I will show her pictures from the last sleep study and tell her that she'll be having another one on Sunday.
Or....may I should not show her this picture from the 2011 sleep study? It's hard to say, but I suspect she'll do better if she knows what to expect and it's not a surprise but maybe words are enough without pictures (which could be scary).
This has not been a fun process but we have made good progress to where I am confident that the sleep study will go well this Sunday. They will titrate her, meaning start with the lowest CPAP setting and adjust it higher as needed until she is sleeping comfortably and we know what level of support she needs.
After the sleep study it takes awhile for the sleep doctor to "read" the results though our Pulmonologist might ask them to rush the results. In addition we have the videofluroscopic swallow study on 6/25. Hopefully after we have the results we'll have greater insight about what to do next. Remember all this is with the Botox injection, which wears off and would have to be repeated in order for her to be decannulated using CPAP for sleep. If we do that she will likely have struggles. The benefits of getting the trach out might not outweigh the risks. It's times like this that I pray to God. If you are out there please help guide us to the decision that is best for Ainsley.