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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.

    9 comments:

    Angela Miller said...

    Poor Cole. And poor Mike and Dalynn. Trust me, we feel your pain. Ask the doctors if Cole could try Melatonin. That's what we did for Charlie when he was on the ACTH, his Neuro. told us about it. It's OTC at any drug store, here is a pretty comprehensive article http://www.keepkidshealthy.com/medicine_cabinet/melatonin_sleep_problems.html

    We'll be praying for good sleep and a happy baby!

    Michael.Rollins said...

    Thanks, Angela.

    We've tried melatonin, and Cole said it "makes my mouth feel funny". So, we stopped giving it to him. It did seem to put him out, but that's not the problem. The problem is getting him to stay asleep.

    We may have found a sort of solution. We've been bringing him into bed with us the last few mornings when he's woken up early and he will actually sleep pretty well that way. The true time to tell if this is an actual solution is when he's on steroids and the week following.

    Anonymous said...

    Michael, I have the perfect solution that answers your prayers, and selfishly mine. Grammy just has to move back here. Then she can do some sleep overs to help with Cole, and give you guys some rest. Just a thought... Mrs. Nelson

    Michael.Rollins said...

    We'd be totally stoked if Grammy moved back here. Poppy, too. They would amount to free baby-sitting, which in our book would rock! And, she does like to snuggle with him while he sleeps, so that would make her happy, as well.

    Anyways, bringing him into our bed with us in the AM seems to be working out well. He'll sleep pretty soundly from about 4 til about 6:30, which is worlds better than it was.

    HeatherL said...

    Oh Mike! Sometimes it seems like the punches just keep coming. Big (((hugs))) I don't know what to say except that it seems to be that way for us too sometimes. We do pray for ya'll and I will specifically pray that Ava will be a awesome tempered, good sleeping baby. When I found out I was pregnant (after all our issues with Parker), all i could pray for was the new baby's temperment. Guess that's not necessary now, but I know you NEED Ava to be good. I think you guys are AWESOME parents and one day (because you are going to survive this) you will hear a much deserved "well done" from the Boss! I think of you guys everyday and I seriously hope it gets better. And, btw, I'm praying for you too. I hope you guys have a flood of good news for us soon! (((hugs)))

    Anonymous said...

    Hi, Mike..It's Gigi. Just know that I love you guys and think of you every day. I am aware that these days are very difficult, and know that I pray for each of you and wish that I could remove some of your stress. I can neither expain nor understand why these things happen, but I do know that you have untold suppport to help you through it. Love to all. Gigi

    Anonymous said...

    Hi, Mike..It's Gigi. Just know that I love you guys and think of you every day. I am aware that these days are very difficult, and know that I pray for each of you and wish that I could remove some of your stress. I can neither expain nor understand why these things happen, but I do know that you have untold suppport to help you through it. Love to all. Gigi

    Anonymous said...

    Michael, I have the perfect solution that answers your prayers, and selfishly mine. Grammy just has to move back here. Then she can do some sleep overs to help with Cole, and give you guys some rest. Just a thought... Mrs. Nelson

    HeatherL said...

    Oh Mike! Sometimes it seems like the punches just keep coming. Big (((hugs))) I don't know what to say except that it seems to be that way for us too sometimes. We do pray for ya'll and I will specifically pray that Ava will be a awesome tempered, good sleeping baby. When I found out I was pregnant (after all our issues with Parker), all i could pray for was the new baby's temperment. Guess that's not necessary now, but I know you NEED Ava to be good. I think you guys are AWESOME parents and one day (because you are going to survive this) you will hear a much deserved "well done" from the Boss! I think of you guys everyday and I seriously hope it gets better. And, btw, I'm praying for you too. I hope you guys have a flood of good news for us soon! (((hugs)))