After Ainsley's granuloma removal and adenoidectomy on Feb 8th we were very excited to try capping again, meaning we place a plastic cap over the trach which then requires Ainsley to breath through her nose or mouth instead of the trach tube.
According to the pulmonologist's wishes we waited until 2 weeks after our appointment with him to allow for any swelling of her airway, due to the surgery and procedures, to return to normal. On Feb 26th I tried making a real effort to keep the cap on the entire day since it is our day home together (no school, nurse & the other kids are at school). It looked like this 11:40 placed cap 12:00 A removed cap and I replaced it 12:15 A removed cap and I replaced it 12:45 A removed cap and I replaced it 1:00 A removed cap and I replaced it 1:10 A removed cap and I replaced it 1:20 A removed cap and I replaced it 1:30 A removed cap and I replaced it 2:00 She went down for a nap, and thank God, I get a break 7:30 put cap back on 8:00 she took it off and I replaced it. Repeat. etc. (At that point I stopped recording the times because it was family movie night and I just couldn't keep it up. Although she did continue to wear the cap off and on for the rest of the night.)
So day after day we kept trying but as I got busy with other things (Evie's birthday party, Adrian's new bedroom furniture) I wasn't always right there to replace it. Then after last Friday's accidental decannulation I had an epiphany, it was never going to happen if I didn't treat it as serious business. Sure I could request a hospital capping trial so we could really see how she did (and I still might do that), but I could also just take that time at home to really step things up a notch. So that's what we did over this past weekend. She did pretty well so, come Monday, I actually asked the nurses to do the same. In addition to the weekend she kept the cap on all day M/T/W (except naps or when we were driving). Since she was doing well I tried letting her nap with it on yesterday to see how she does while sleeping.
It took a bit to get her to sleep. I'm sure it felt different. As you can see she was being a little rascally, where normally she falls asleep right away.
But she did eventually fall asleep and did pretty well, well great, actually it doesn't get better than 100% but she seemed to have to work for it.
Then right after this picture about an hour after going down I could hear over the baby monitor that she started to struggle so had to run up the stairs to check on her and she then got to the point that she woke and was gasping for breath and crying. I took it off so she could nap. It very well may be that as Dr. I suspected she will have trouble with sleep apnea due to the narrowness of her palate and uvula. She also may need more time being capped during the day to get "used to it". It might be startling to wake up and find you can't breath through the trach like you normally do.
As Dr. D said even failure will give Dr. I information. So hopefully we have gathered enough data because we see Dr. I tomorrow for follow-up. He is going to scope Ainsley to look at her vocal cords while she is awake. And hopefully we will formulate a plan. Although the plan may be to wait. Of course I'm tired of waiting but it may be the reality of our situation. But my hope is that we'll come away with a surgical plan.
The interesting thing that we discovered during these trials is that she seems to like the cap. I won't lie, she does have to work a bit harder. There is some nasal flaring at times but no retractions. At times she gets winded with exertion. And at times I think I hear a degree of stridor which was her symptom at birth. The good is that, I think she finds it easier to vocalize and she likes that. And she's getting to be quite opinionated which is a pain but very cool! I just don't know how we will ever work up to wearing this darn cap 24/7 it just seems impossible. Especially since this is what she really likes to do with the thing.