Life as a Leach

I'm not gonna lie--today was rough.  Abby is feeling rotten, and just doesn't want to do much of anything.  Her sleep is fitful and usually is full of moaning and tossing.  She doesn't want to do anything at the playroom and just cries in pain.  She's (obviously) very whiny, which I totally get....but that doesn't mean it isn't taxing!  My poor, sweet girl isn't feeling well at all, and it's got me asking what the coming years will bring.   These are supposed to be the "easy" surgeries where the kids are back to their usual selves the same afternoon of surgery.  A lot of these kids go home the same day!   But Abby is still moaning in her sleep, her oxygen levels dipping to the mid 80s and staying at the low 90s.  We are trying to hold out on oxygen, but if she needs it, she needs it.  Doing these expansions every 4-6 months until her chest wall is done growing is going to be rough if this is what each one will be like.  I've been to...

Abby will have another big insertion surgery in April or May to put in 2 long rods.  We are hoping that he can do both at the same time, but he said he would have to think about that.  Her kyphosis has gotten significantly worse in the last year, which we knew, so these rods should help to stabilize her and straighten her up again.  Unfortunately, it means 2 more big incisions and at least one more major surgery (although all of the veptr surgeries are considered major).   Abby is still in a lot of pain, but they said they can't really go up on her pain meds.  I got her to the playroom only for her to cry from the pain and ask to go back.  :(. If you have been following her journey long, you know that we have to practically drag her away from the playroom, so this is pretty sad.  She is so pitiful and it's hard not being able to do anything to help her.  Please pray that they can get her pain under control.   Matt headed home for youth group ...

Abby didn't get much sleep last night.  She really is hurting and spent a lot of the night groaning.  She finally got a good stretch in around 2, but was woken by the ever-chipper ortho resident at 5.  I don't get why they think it's a good idea to turn the lights on when the patient is sleeping!   She got a ct scan this morning to check on those vertebrae I mentioned yesterday.  I'm anxious to hear what Dr. c thinks.  When we got back from ct, she unfortunately got sick...which earned her an impromptu bath.  She's now sleeping fairly peacefully, so I hope she can get a good nap in.  Maybe I can too!

Abby's expansion surgery went well.  We had our favorite anesthesiologist (I'm aware that it's weird to have a favorite, but when your kid has a ridiculous airway, you stick with the guy who can intubate her!). The funny girl clamped her hand over her mouth as soon as she saw the mask.  Ha!   Dr. C was able to expand her rib cage 2 cm on both sides.  In his words, "I cranked her up pretty good!"  He is concerned about the way her vertebrae are stacking...they are now shaped more like triangles than rectangles.  Abby will get a ct scan tomorrow to confirm, but she will most likely be getting long rods put in next time on both sides to try to stabilize the spine.  We knew her kyphosis (hump at the top of her spine) was getting worse, so this wasn't much of a surprise to us.  Unfortunately, it means another really big surgery.  He did say that he got a good feel of her ribs today and they are much stronger than before, so getting the long rods ...