Surgery update
MummyGruetzie
member
DD had her brain surgery two weeks ago. She had a halo placed and got a trach. She's recovering beautifully. Its been almost a week since she's even needed Tylenol! Really, the only complication has been eating. I think its a combination of gagging on the trach and the vest from the halo creating a new heavy pressure on her torso. Right now she can't even handle a quarter of what we were getting before surgery. Right now, her primary nutrition comes from TPNs and Lipids in her PICC line.
Every morning when she wakes up she's super scared, but I comfort her as best I can and she's usually okay after a few minutes. I've been surprised that I really can hold her. Its not your typical cuddle, but I'm finding ways to connect still. I feel like our bond is getting stronger, but I'm almost scared to type that and jinx myself.
We're able to do pretty much everything we could before, its just a little bit harder with her bars. Even tummy time, which we do on a mat from PT and then I just put a mirror under her face since she can't move head at all. I've been surprised at how much she's been enjoying it. But yesterday, she got really really upset when we went to do it and got up on all floors and rolled onto her back!!! I couldn't believe that she'd already rolled over in the halo, so I put her back on her tummy and sure enough she did it again. Then she started shimmying on her back the way she did before she'd learned to crawl on her tummy at all. Definitely didn't expect things to happen this quickly. She can't bear wait standing very well (she'd been standing for a good 10 or so minutes and walking with assistance), but she had a bone graph taken out of her hip so its probably still a bit painful.
We're transferring back to our local hospital some time soon--hopefully today, but have just been waiting for a PICU bed to open. We'll get x-rays to check the progress of things from home and then return here in about 4 months, or whenever her skull integrity starts to compromise.
She's medically stable and basically we'd be free for discharge if not for the logistics of her care. Trach training is usually 6-8 weeks. I've gotten most of it done in two weeks (DH is a bit behind me since he's had to work), but we're not sure what our local hospital will transfer of that. Here, they require at least two weeks of 24 hour nursing in place before you can go home. There's also the stuff like ordering the machines/supplies for the first time. We've finally gotten her off of the vent for the transfer, but we're not sure if they'll have us go back to CPAP at night as a precaution, once we get to the new hospital. That had been the original plan.
Thanks so much for all your thoughts, prayers, and words of encouragement through all of this!
Re: Surgery update
Glad to hear she is doing so well, and you will be moving to the closer hospital soon!
We will keep praying for her.
Katherine
It's so good to hear that things went well. You have a tough little girl!
Thank you for the update!