Well. Where to start.
Oncology clinic, went well. Swift for a change and that made it pleasant. The attending took one look at her and said he can tell just by observing that she's doing well. He's right, she's extraordinary. The nurse called me once we were home with her counts. Oddly, her white count is down a bit as are her lymphocytes (or leukocytes ... can't remember). Anyways, her virus fighting cells are a little low and she asked if she had been sick. Ironically she's been snot free for over a week now, it's been terrific. Nobody is worried though, hemoglobin and platelets are good, 14.1, 331,000 consecutively, and she has NO blasts! We'll just see what happens next month. Here's the fun part. We're almost to that one year mark which means we'll only have to go to clinic once every three months. Ryan and I decided that's going to be hard going three months!
As for ENT clinic, we didn't learn much. She looked at her throat of course and her ears. Before we can make a decision on whether her tonsils stay or go, she needs a sleep study, and that is proving to be quite a process in itself. So here's the plan.
Fill out paperwork, mail to sleep clinic.
Wait for sleep clinic to call.
Schedule sleep clinic appointment for a history. (booking 2-3 months out)
If they deem necessary, schedule a sleep study. (you guessed it, another couple of months)
Schedule another ENT appointment to talk about sleep study, where we will make decisions about having her tonsils and adenoids out.
So if you're like me, you're adding up the time here. I'm guessing it will be 4-6 months before we even know whether or not we need to schedule the T&A surgery.
So in the meantime? Pobrecita continues sleeping restlessly, gasping for breathe at night, and as of late coughing in her sleep. Of course this freaks me out, I hate watching her struggle in her sleep and I'd like some answers. I especially wonder how much this affects her cognitively. If she's not getting quality sleep, she's not functioning her best at school or at home. Also, if she's having apnea episodes, there could be a significant lack of oxygen getting to her little brain. News flash: Chelsea is already delayed ... It just ticks me off to think we're waiting while she continues to get held back further and further. Come on people. She's three years old and she's not talking. I feel like my hands are tied.
I was asked about getting this done locally. The other center in our city that does sleep studies is booked out five months. Even worse.
Hello world!
3 years ago
5 comments:
The Dr. isn't able to get her in sooner than that??? You would think that if the Dr office would call them to set it up they could put a rush on it....
I've had a few experiences similar to that - most recently getting Shawen into the Neurologist to see about his tics took several months.
I guess there are just shortages of certain specialists - at least the good ones. But, you're right, it doesn't seem fair to make Chelsea wait for that appointment.
Sounds like the Clinic Day was a good one overall, though - so YAY for that!
I'm glad the oncology clinic went well....that's the BEST news.
Sorry to hear about the long wait to decide what to do about her tonsils. Since I live in the land of the waitlists, I can totally relate. While we didn't have to go through a sleep study (the ENT decided based on her sleeping habits and the size of her tonsils that they needed to come out. She was going under for tubes anyways so we did it all at once), we still had a LOOOONNNNGGG wait for surgery. 6 months to be exact. I think the issue here was that our ENT was only in surgery once or twice a week, plus lack of OR rooms and beds.
Anyways, I'm rambling. Hopefully things will happen alot quicker. I think it's a waste of time for everyone involved to do a sleep study when it's obvious she is having apnea issues. But I guess since you and I don't have a medical degree then our opinions don't count.
Carey....I'm not sure if this will mean a thing or help you out at all with Chels. But when Layton had his T&A (at 2/2 years old) our ENT said a sleep study wasn't neccessary. She said that the study actually costs more than the T&A surgery (including Layton staying over night in the hospital afterward becuase he was so young)
We also asked for statistics on T&A's with kids/people with T21. She said that 80% of folks with T21 with have a T&A due to sleep apnea at some point in their life. So we opted to go through with it, without the sleep study.
I'm wondering if this is something you could do? Also, can they order an overnight oximetry (at your house)to give you an idea of her pulse ox?
The whole sleep apnea thing scares the bajeebies out of me and I hate to think of Chels (an you guys) having to wait that long....
Carey....I'm not sure if this will mean a thing or help you out at all with Chels. But when Layton had his T&A (at 2/2 years old) our ENT said a sleep study wasn't neccessary. She said that the study actually costs more than the T&A surgery (including Layton staying over night in the hospital afterward becuase he was so young)
We also asked for statistics on T&A's with kids/people with T21. She said that 80% of folks with T21 with have a T&A due to sleep apnea at some point in their life. So we opted to go through with it, without the sleep study.
I'm wondering if this is something you could do? Also, can they order an overnight oximetry (at your house)to give you an idea of her pulse ox?
The whole sleep apnea thing scares the bajeebies out of me and I hate to think of Chels (an you guys) having to wait that long....
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