Ellie really sailed through this one. We are home. She is playing and bright eyed with one red cast and one purple cast. She wants to play and is keeping down her food.
She is my brave warrior princess. The operation went well and I can't believe the position her feet are in. Now we just have to get through the casting and the pain management when the block wears off.
Thanks to all for your well wishes!
Added this bit 5 hours after being home:
Ellie got this epidural block just before the surgery that helped her be more comfortable during the surgery. Well...it's worn off and yikes she is in a good bit of pain. We did end up having to give her 1 cc of Valium for the spasms and Tylenol with codeine for the pain.
Poor little babe can not get comfortable. So it will be a long night staying ahead of her pain. The good news is the is still keeping her food down and at the moment is resting on Dada. Hopefully she will be able to rest. Any one with any tips on getting an active 4 year old to stay put with her feet up to keep the swelling down, please let me know. Because Ellie is not thrilled with this arrangement and her poor feet are really swollen. I knew it was too easy.
15 comments:
Great news! Delighted to hear Ellie is home and doing well, she really is a brave warrior princess :) Love Aunty Rie
WOW!!!! Welcome home :)
Ellie,
We were thinking of you all day and are thrilled you are home already. Love to all. Grandma Bernie and Grandpa Paddy
Ugh. I was afraid that might happen when the block wore off--my best advice (from having nursed several children through various surgeries) would be to give the pain medication around the clock for the first 48 hours or so rather than waiting to see if she needs it. Nobody wants to drug their child unnecessarily, but staying ahead of the pain as you mentioned is much easier than relieving it after it has gotten bad. My oldest had some foot surgery as a two-year-old, and I had the child prop that cast up so that we could SEE it, and help me decorate it with markers and stickers (puffy paint would be cool, or glitter spray, or whatever you have on-hand). If you get lots of LITTLE stickers, like those sheets of foil stars, that would mean keeping the cast up where you can see and decorate it longer. Darn...I also had some success with putting a puppet on the cast and urging the child to keep it up so that the puppet wasn't upside-down; sure I looked dumb crouching beside the cast and doing a puppet voice, but that kept it up, too. Since Ellie likes letters, you might try decorating with some letters that are "right-side up" when the cast is raised in front of her. Good luck!
Watch for constipation--it seems to happen with a caudal block sometimes, and it's really the last thing a kid needs when they're post-surgical, eh?
On keeping feet up--We have a double-long stroller that works as a bed for Jake in these situations. (It used to be a double stroller, but with the both seats reclined flat it's the right size for his long bod.) He has to keep his legs up to be comfortable in that, but we can also move him around, go for walks in the neighborhood, etc.--it's lying in one same place, not so much the position itself, that's the boring part for him. If you can rig up a red wagon with pillows or couch cushions, or something else that lets her prop her legs and still be relocated often, that could help some.
Sad to say, valium and other pain meds don't really work too well for Jake, so it was a rough time after his recent surgery. Hope Ellie responds better to the drugs, and the swelling goes down soon, and everyone gets some peace.
Don't you wish you could get one of those epidural blocks that lasts for a week? I know Charlie was great when he had one after his g-tube surgery and then cried almost non-stop for the week after. I think that's a great idea about the stroller. I must admit, I'm a little sad thinking that this stuff may lie ahead for my Charlie.
Glad she is out and on the way back to getting back into that pony! I second the other poster about giving her pain meds round the clock for the first few days. Breakthrough pain is so hard for little kids to communicate. Also, if the doc okays it, Miralax or fiber snacks. (My kids really like these fiber one granola bars) if she can keep food down. ALL pain meds seem to cause constipation when taken for that many days. So, if you can keep a step ahead of that, this will keep her comfortable. Great suggestions regarding the cast. I agree that it isn't so much the position as the being stuck in one place. Even figuring out a way to move her about the house can be helpful. Does her wheelchair offer any kind of tilt or leg raise? Take her with you to get those drinks of water or when cooking dinner. It will make the hours pass by a bit quicker.
Glad she is on the other side, hope she stays as comfy as possible and the recovery is quick.
Hi Ellie. Well done. We were thinking of you. Granpa and Granma.
Hi Everyone and thanks! I love the idea of the little stickers on her casts - thanks for that one Eliza. And I am going to try her in her stroller maybe - her kid kart is working pretty well because we can put pillows on the foot rest and it reclines. But I am dealing with one grumpy little Boo. We are giving her the tylenol with codeiene every 5 hours and barely keeping up with the pain. Today we go to hyperbaric at 1:30 - so hopefully that will help with the swelling. I am TIRED! But Ellie's color looks good and other than a big vomit at 7am she is keeping the food down. I think the tyelenol with codeine upset her stomach.
We also have Myralax so will be keeping on top of that issue.
And you know what, I do wish the block worked for the week or two to save Ellie the pain.
Ah the fun, happy halloween everyone. I think I will answer the door in the disguise of an exhausted mama!
Kathryn,
Glad to see she is home and the surgery went well. It's not nice to see them in pain you feel so helpless. Can you also give her Motrin or did they tell it wasn't recommended. You can give Motrin at alterenating times with the tylenol and codiene (I am sure you already know that) they work well together. Keep her feet up as much as possible and it will help with the pain as well.
Hopefully in a couple days she will be feeling better.
Best wishes
Get well soon Ellie. I hope she feels better as soon as possible. What a brave girl :)
I'll be thinking of all of you and hope that Ellie can get comfortable and isn't in too much pain. Were they able to accomplish what they wanted?
PS Kathryn, did that show ever air on Chronicle? I've been watching for it...
Oh, those damn epidurals wearing off. I remember those days too well. I second (third? fourth?) the recomendation about giving drugs regularly even if she doesn't seem to be in pain the first few days. Once she's hurting again it takes so much longer to get the next dose to kick in.
Also, a warning: I think Ethan had a few more areas worked on during his surgery, but the spasms lasted a lot longer than they told us they would. They said they'd be gone within a week, but he seemed to be uncomfortable on and off for several weeks. Hopefully Ellie doesn't have the same issue, but just play it by ear.
The way Ethan's cast was set up, he couldn't sit at all and was completely flat, so we actually used a wagon with lots and lots of pillows for going out for walks. Fresh air and movement helped with him, since he can't see and wasn't easily distracted with visual things like books or movies.
Best of luck. How long until the casts come off?
Glad to hear surgery went well. Pain management is always hard, post-surgery.
I'd agree that pre-emptive pain meds are a good way to go. We also try distraction. We remove most rules on how much t.v. and DVD watching is ok. Most of the time, a Laurie Berkner video will move Hannah's focus off the pain (with the meds help) for awhile. It may also help her stay in place w/ feet elevated, etc. without too much complaint for 30+ minutes at a time.
I will be saying prayers for sweet Ellie. Another idea for the casts...my sister glued colored gems on my neice's cast and made flowers and spelled her name...it was very cute.
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