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    Wednesday, January 7, 2009

    Happy New Year (and Some Frustrations)

    I hope that everyone had a happy New Year. It was uneventful at our house, which is all we asked for.

    A lot of times, I turn to my blog out of frustration and this time is no different. It's a bit like venting, but you all get to read it instead of hear it. Here's what's bothering me this time: Cole still isn't sleeping well!

    Neither Dalynn nor I have had a full nights sleep in so long I can't remember the last time I had one. The thing that's killing me is that it seems to be getting worse, not better. For instance, when we started maintenance Cole would have sleep issues for the week of steroids, then they'd calm down and he'd sleep fairly well again. Then, the sleep issues extended to the week after steroids, as well (and we're still having issues there). Now, though, for the last two months, his sleep issues have lasted almost the entire cycle! He's just barely getting into a "normal" sleep pattern again when the next round of steroids hits.

    I just don't know how we're going to do it with a new baby on the way. As things stand right now, Dalynn and I alternate nights, so one of us gets some uninterrupted sleep. However, when the baby comes, it's not going to be fair to ask Dalynn to take any nights when she's going to be up with the baby, too. That leaves me to deal with Cole's sleep problems all by myself, night after night. I'd say that the only hope we have is that Ava will sleep through the night as quickly as Logan did.

    Things are further frustrated by how conservative Cole's doctors are. Cole is having some real issues with coming off of steroids cold-turkey. The doctors at CHKD don't like to taper, though, so we've thought up to this point that it wasn't an option. However, on obtaining a non-official second (and third) opinion we've found out that other pediatric oncology docs don't have a problem with tapering kids off of steroids. We're going to ask them to taper Cole, and if they won't, we're probably going to go with an outside channel to taper him (using inhalers with steroids).

    I'll be honest, I don't want to go outside of Cole's oncologists, but we feel that we're at a sufficient crises point that we have no other option.

    Further, they won't prescribe him any kind of serious sleep aid. Now, I don't want to have to put my son on some kind of sleep medicine this young in life, but I don't know that we have much choice. We've pushed and pushed, and they finally agreed to ativan (sp) but it's only effective for 6 hours, which isn't really long enough. We haven't tried it to its fullest yet, but I don't expect huge results from it.

    The depressing thing is that I was under the assumption that things would get easier the further into maintenance we got, but just the opposite has happened. It's hard to not get down in the dumps when everything looks bleak.

    If I could offer up a few prayer requests, here's what they are:

    • That Cole would sleep better.
    • That the doctors would really listen to us and work with us in treating Cole's side-effects.
    • That Ava would be an awesome baby, that she would have no reflux and that she would sleep through the night quickly.