Tracheostomy Scheduled For Tomorrow

Yesterday they made their final extubation attempt. Ainsley breathed for about an hour on her own after the breathing tube was removed, but with great difficulty. It was clear that it was tiring and stressful for her and she still had stridor (the wheezing sound). The ENT doc said that it looked like the swelling in the throat/upper airway had improved since the last time she looked but was about as bad as it was the first time she looked.

Steve and I want Ainsley to come home. In the past few weeks she’s started changing a lot. When I visit she sucks on my finger for the entire time (up to an hour or so) despite the fact that she has a tube in the way and she has to fight the gag reflex initially. And she loves to be held. And if we are lucky enough to be visiting during the infant “quiet alert” period she will look into my eyes while I’m holding her. She’s even started taking a pacifier, which helps keep her happy when we aren’t around. It’s obvious that she benefits from being close to us and I think it will help her development not to have that tube in her throat. So we have decided that it’s time for her to do a tracheotomy. Last night they added her to the surgery schedule for today. It’s possible that she’ll be bumped if there is an emergency but we’re hoping it’ll happen today so we don’t have to wait until next week.

Yesterday we met with a team of 7 doctors and social workers. Mostly to review information that we were already aware of. Unfortunately they did tell us that they estimate she’ll stay at Children’s for the next 6-8 weeks (maybe now 5-7 weeks since I was able to persuade them to squeeze the surgery in this week) if things go well, longer if they don’t go well. She’ll first spend a week recovering from surgery in the ICU. Then they will need to train us on how to care for her tracheostomy (it’s pretty involved). The occupational therapists also have to assess her ability to feed (they do it gradually so it’s safe) and make sure she’s doing well feeding. There may be equipment that we have to get for home. And, most importantly they need to have a home care nurse available to come relieve us at home while we sleep and there is a shortage of home care nurses. Having a nurse at home would probably be temporary but is important initially for Ainsley’s safety and our peace of mind. Our current plan is to modify the playroom as Ainsley’s “bedroom” so that she is downstairs with me during the day and that the nurse can be downstairs with her while we’re sleeping. Of course I’ll be pushing to shorten the amount of time she stays at the hospital if at all possible.

After Ainsley is moved out of the ICU onto the main floor we are hoping things will normalize some and we’ll have more of a regular routine. And it may be easier to have visitors. Especially since it should be easier for her to be held. (It’s not easy for the nurses to move her now because of the breathing tube and all the other wires. And only one person can visit with a parent at a time.)

Thanks again for all your offers to watch the kids (And yes, Evie and Adrian are doing just fine), bring dinners and help out in other ways. We know you are all thinking of us and hoping for the best for Ainsley.