Jul 30, 2014

Decannulation Update & Other Stuff

I've wanted to give you an update on how things have been going since decannulation last week. For the most part things have been going well for Ainsley. We have adjusted rather quickly to life without a trach. In reality the daytime isn't a lot different. Summer has always been the best time for Ainsley and because she'd been capping, so things are much the same as they were. What we DO love is not having to hunt for her cap all day. She used to take it off and leave it places or even throw it. Particularly if she cried. She does have trouble breathing when she cries, much in the same way that a young child will sometimes cry so hard there is no sound and they don't breathe. That is how it is for Ainsley nearly every time she cries. There is almost no sound, ever. We used to pull off the cap when she'd cry, so I wasn't sure how it would go and the first few times I had to watch her cry and had no cap to remove it made me squirm a bit. I'm sure the more we see her "be okay" the more confident we will be that she is going to be fine when she cries. We just need some more time. 

After taking a day off from summer school  after decann (at the Pulmonologist's request) he returned and did so happily. People at school were glad to have her back and see her without the trach. With all Ainsley's had going on summer school was a bit of a bust.

Unfortunately after one day back Ainsley had to take another day off for a therapy consultation at Children's (plus she had a post-op appointment the same day). We only have 4 sessions total, spread out throughout the summer with the goal of tailoring an optimal home program. This therapists schedule is quite full so you have to take what you can get. She put Ainsley onto this ancient stair stepper and though it was difficult for her to keep her feet on the pedals she did great. It clicked with every step. It was a good opportunity to see how she did with a bit of exertion. She managed through it.  

We have a home regime that includes stretches, exercises and on this night she played "Beanie Baby Basketball", remaining in high-kneel for balance and core strengthening. We've been collecting these for a bit and now have 111. That's a lot of throwing and it gets Ainsley breathing hard. Again, I will feel better after seeing that Ainsley can consistently work through the trouble area of exertion. 

The truth is there are many times during the day that Ainsley's breathing doesn't sound great. But she's been working through it. The bigger issue is sleep. It seems that her airway is collapsing faster than ever when she falls asleep. Perhaps due collapse of her trachea at the stoma due to the trach removal (the trach can give a stenting type effect).  So where she used to be able to go an hour or two asleep while capped she now seems to obstruct more quickly. If she falls asleep on the couch we have to get her hooked up to CPAP within 30 minutes. It's a bit frightening to know that she is so dependent upon the CPAP. She really can't sleep at all without it. We are thinking we will have to buy a generator in case of a power outage, and take the machine with us if whenever we are out and there is a chance of her falling asleep.

In addition her breathing has been quite noisy when she sleeps. Stridorous I guess. Even with the CPAP. And her sats on CPAP are staying at about 95% where she would sat at 98-100% with the trach. Sometimes she wakes up crying. And sometimes the machine gets wet and we have to take the mask off, clean her up and put the mask back on. She doing it though so that is good.

There was a part of me that really hoped that the OSA would get better without the trach but that hasn't happened. I do think we need to give things a few more weeks.

What we really need most is to see how she handles being sick.

I had hoped that decannulating would provide some benefits to Ainsley during the day in the form of increased speech, eating and energy. So far I'm not sure. I don't think it's been long enough. In all honesty I am not sure how I feel about decannulation.  If she had a fantastic airway and didn't need CPAP I'm sure I would be elated, but that is not our situation. I haven't given up hope that things will improve over the next month or two but if it doesn't in all honesty I think she would be better off with the trach.

I don't regret our decision to move forward and try it. It is the only way to truly know what is best for her. And if it turns out that the trach comes back I will be totally okay with it. Only time will tell at this point and it could go either way but let's just say I'm not cleaning out her closets and packing up her medical supplies just yet. 

We have been doing a bit of de-cluttering and organizing. Call it late Spring cleaning. Ainsley wasn't much interested in her chocolate advent calendar so it has been in the pantry and I didn't have the heart to throw it out. I brought it out this week to give her a piece and she surprised me by happily eating the whole thing.

Then the rascal got into the chocolate biscotti I bought for Steve and opened the package. She also took a banana and ate it. See the end she left on the counter top when she peeled it? She is getting more independent. This week she turned Netflix on all by herself. That means turning on 3 electronic pieces and navigating through the menu with the remote. There are adults who can't do that. We were impressed! 

She ate that entire biscotti. Dry. Which was impressive. I thought this picture also shows how nicely her eye has healed since her eyelid surgery two weeks ago. The surgical part was done on the left eye only. That was also the eye that had the inverted lash. I'm not sure if the eye appears larger due to surgery (to me it still looks smaller than the other eye) but she is certainly opening it more now that the lash isn't poking her eye. 

The kids left for camp Sunday. They have really been looking forward to it. The week leading up was consumed with laundry and making sure they had everything they needed. I was ecstatic that they were nearly able to pack by themselves and they are old enough that I didn't  have to label all their clothes. We actually made it on time. Victory!

We dropped Evie off in Seattle with her friend. They have been friends since Kindergarten. At age 13 going off for a week to ride horses with a good friend has got to be the best thing ever! She's grown up so much. Last week she was invited on a group outing by a boy. Even though they like each other we are NOT considering it a date. Those days will be here too soon!

Steve and I drove Adrian to Camp Colman. He was very happy to see a friend in his cabin from last year. Amazingly it turns out the boy lives in Kirkland, the next town over. So I expect Adrian is going to have a fantastic time too!

The lake at Camp Colman. It's gorgeous and every year we drop off I wish I could be a kid again and stay.

Look at those beautiful trees towering over the cabin. It's a large facility nestled in the woods on the hillside of the lake. The trails make it difficult place to bring Ainsley so my sister Sheryl came to watch her. We left at 1:00 and didn't return until 6:30. I think I'll stay home with Ainsley when it's pickup time on Saturday.

Ainsley is off to school with her nurse for the last week of summer school. I am enjoying a few hours to myself before she comes home at 3:30. I am hoping to finally finish my A-Z Family Scrapbook for Ainsley since I have a free album if I can finish by Thursday. Steve has been busy at work but is taking tomorrow off so we can clean out our attic storage which has been on the to-do list for over a year. We have too much stuff and I'm tired of having beds in my living room and a garage so full I can't get to my gardening tools. I'm hoping to sell some things on Craigslist.  We've been a bit focused on taking care of things around the house. I am hoping to plan some fun stuff for our family in August though. I didn't feel like I could until we knew what was happening with decannulation. It feels like for the moment we are in a good spot and life is good.


  1. I would imagine it takes time to see the benefits of life without a trach. I can't wait to see what the future brings! I'm sure the kids will have a wonderful time at camp. I think we'll have to look into it next summer for Murphy.

    Miss you! xoxo

  2. wahooo!!! exciting summer for you guys!!! i miss you!~wyndi

  3. i am so glad you called today I am sorry we where not able to talk more! looking forward to getting together Monday!!

  4. you have BEAUTIFUL kiddos
    We live in a Seattle ( suburb) as well