Anyway, here he is with his cap on...
|He wasn't a fan of the hat.|
|He's such a good sitter!|
Changing subjects, Harlie is getting sick. She's coughing like crazy and requiring a ton of suctioning (which is never a good sign) and she has a lot of thick secretions. Her nose is running, and she wants so badly to blow it. So she asks for a tissue and then makes a sound like she's blowing her nose, but she's really not. She's never been able to blow her nose. With the trach, you can't build up the pressure. Unless she's wearing the cap, but then she just blows off the cap. Oh, it's the little things... Her oral feedings are not going well (she has a really hard time eating orally when she's trying to manage increased secretions). Ugh. Wouldn't you know it? She has four days to get better before school.
And I don't even want to think about what this means for her upcoming capped sleep study. I am trying really, really hard to just let it go and let it be whatever it is supposed to be, since none of this is in my control. But, it is hard. Really, really hard.
Let me see if I can explain it simply and without 5,000 words...
Her Boston docs want her to have a sleep study before they will schedule her next jaw surgery. If she passes the sleep study (can sleep without problems while wearing a cap, which means the trach is closed off, and all her breathing is done through her mouth and nose) then she could potentially be decannulated (have the trach removed) and she wouldn't need surgery until she begins to have breathing issues. Another jaw surgery is inevitable (in fact, they've told us several are most likely in her future). The bone they put in her jaw will never grow at the same rate as the rest of her good bone, so eventually, she will outgrow her current jaw. And that will continue to happen until she's done growing.
However, if she doesn't pass the capped sleep study (which is the result I'm expecting based on my home studies here), then she cannot be decannulated and that means that we would want her to have jaw surgery asap (this summer).
But, we need to get her on their schedule because we can't afford her to miss any more school if we can at all help it. And I'm afraid the more time that goes by, the more likely we won't be able to get a summer date that affords her surgery and recovery time before school starts.
And she cannot have the sleep study if she's sick. And getting a sleep study date takes months. We scheduled this date two full months ago.
So, if we have to reschedule the study, then as you can see, we'll be well into 2013 and will likely not get a summer date, which means we'll have to decide if it's worth her missing school (really not an option) or if we can wait another WHOLE year for surgery.
So, like I said, I'm trying really hard to just let things be. Because I have virtually no control over any of this. What I really need to do is just embrace the trach for the long haul. But, I just can't think about that. The thought of her still having the trach years and years from now is more than I can handle. I need to break it down in smaller chunks of time. Because when I think about her going to the pool, well, it's just too much. She's six and she still fits in an infant raft with a built-in seat. That isn't going to last forever. What are we going to do then? She loves the pool!
Anyway, so that's the scoop on the capped sleep study.
Okay, must go and take care of some things. More later!