PT on Monday – she loves to be outside! I’m so afraid of what we are going to do when it’s 100 degrees outside and she can’t understand why no one will let her go out! Doesn’t she look great? Such a big girl!
Tuesday morning at way too early in the morning, we loaded up and headed to the hospital. Bella went in for a DL&B – basically they put her to sleep and take a peek in her throat and lungs. They cut off a granuloma and peeked around her airways. She has the normal DS slightly misshapen airways with collapsibility, but not too bad. So much improvement from last year’s DL&B. They cleaned out her ears and noted that her adenoids and tonsils are huge and need to come out. Probably next month or early summer. Then they mentioned the d-word. Decanulation. If I hadn’t been sitting, I would have passed out! Jason commented on my face! My goodness – how far you have come my baby. It’ll take some time, but it’s a when, not an if now. Breathe. Breathe. Breathe.
Waking up too early and waiting for our turn to go back…seemed so strange to not be hooked up to a million things!
I have had such a hard time trusting our pulmologist. I feel like he pushes her so much and I am so very, very afraid of regression. I don’t want to lose what we have all worked so hard for. She has worked so hard for. I seriously was panicking imagining what he would put her through when we were in house. So that d-word really rocked me. Sure, I had hoped that would happen. And I was beginning to allow myself to think maybe next year. But he is talking sooner than that. Panic. Breathe. A million thoughts flashed through my mind when he said the d-word. Nursing – gone. (that is great and that is bad). School – she could go. Life – we could have one. Bedroom – she wouldn’t need half the house anymore. A million thoughts. But mostly panic. Mostly fear – fear of the unknown. I know this world. What is in the next room? Will it be good? What about oxygen? There is no way this kid is keeping a nasal cannula on. What happens when she gets sick? Questions. Fear.
After recovery, we headed up to PCU. They stuck us in a pod. I hate pods! I like it when we have our own room. I am so paranoid about germs when we are in the hospital! But as the hours ticked by, I saw the hand of Providence in our placement. In the pod, there are four beds, so us and three very sick kids. They didn’t move. They laid in their cribs attached to machines. One little one dipped into the 20s. They were rejoicing because she wasn’t bradying as much that day as normal. The other one was headed to Health Bridge, basically a long term ICU care facility for children. And the third one was having troubles with GI, as well as respiratory. I sat listening to all of this while trying to keep my little wiggly monkey in her crib. (and suctioning out blood – ick! granulomas has a lot of blood vessels in them – who knew?) And it dawned on me – we don’t belong here anymore. This isn’t our world. It was. We were there. But in the past three years, Bella has grown and gotten stronger! We don’t fit into the normal DS kid world yet either, but we have left this world behind.
Bella is ready.
(and maybe just as importantly) I am ready. Have I held her back? Or have I kept all of the doctors/nurses/therapists focused on treating her as a whole person rather than just individual organs? I’m not sure, but I know that I have finally gotten to the place where I am ready to take the next step with Bella.
We are ready.
They kept us overnight and we headed in for a chest CT the next day. The doctor is still looking for a reason for her long dependence on the vent. I bribed her with a cookie. She doesn’t eat, but the child can lick! She had fun with that for a while.
Bella always surprises people at the hospital. If people come at her with gloves on, she goes into fighting mode. Wanna check if her IV is still good, you are gonna pay for that knowledge. It’ll take at least two of us holding her down for get that blood return. CT scan and she has to lay perfectly still? LOTS of velcro, blankets, and Mama holding her hands above her head and singing. I love her fighting spirit! She is alive because of it!
So our new plan is to be off the vent whenever she is awake. T&A in about 6 weeks. And then to start capping her. Fortunately for me, I had an excellent pulmonology fellow who reassured me that capping takes time. They won’t just yank her trach out. Right now she is doing excellent. Way to go Bella! You are awesome!
