On the road again…
Unlike the legendary Willie Nelson, I’m not enjoying these road trips very much, and we certainly aren’t going places that we’ve never been. But On the Road Again is our life right now, and will be for awhile longer. (Note: Nathan is using a booster, it’s just not obvious because they are integrated and Sarah Kate is sitting on a thick blanket. Y’know – before someone chastises me… 🙂 )
On Monday night, we made the 250+ mile trek up to Birmingham (again!) for the fourth time in six weeks (and the seventh time since January) for yet another visit to Children’s of Alabama. Thankfully, this time there was no anesthesia required, and even better, Papa (i.e., my dad) is always there waiting for us to arrive.
Sarah Kate’s 4-week post-op appointment was on Tuesday.
We were pretty sure Dr. Doyle was going to choose to remove the casts, but when a doctor tells you he’ll “probably” do something on the next visit, there’s always a chance it won’t happen, so we were cautiously optimistic – about the casts, anyway. He also told us he “might” go ahead with the Botox in her hips (the third and final “piece” of the three-pronged approach recommended in conjunction with Gillette), so we had that to look forward to, as well. Assuming your definition of “look forward to” is a sizable dose of fear and apprehension.
Photos lie. I promise.
Sarah Kate was stressed in advance of the appointment. She wanted the casts off, but she was afraid of the process to actually remove them, and the mere mention of Botox (not the cosmetic kind) makes my brave girl whimper. I’ve never had Botox, but I’ve been told that it’s very painful by others who’ve had it, not just Sarah Kate.
Overall, the visit was a mixed bag.
She did great with the cast removal, though the technician did have a few hiccups by way of a cast saw charging station that had been unplugged by Someone, leaving multiple cast saw batteries with not enough juice to cut. The third time was a charm, though, and he did get them off. Dr. Doyle popped in for a minute while the technician was hunting for a functional saw, then left before he began cutting again, citing his extreme dislike of the sound of a cast saw.
An orthopedic surgeon who hates cast saws?
Yes, I did mock him just a tiny bit. I think he was cool with it. 🙂 He gave me a nickel later for correctly guessing that the ancient name of benzoin, an adhesive used with steri-strips, is myrrh. The resident shadowing him guessed incorrectly (HeeHee).
Once the casts were off we finally got to see The Damage, as in what her incisions look like (although we couldn’t really see much, between the big purple marks and the steri-strips). Sarah Kate fretted that her feet looked really skinny, but I reassured that her feet have always been freakishly narrow and that I have photo evidence to prove it. The littlest left piggy nail also got to see the light of day, revealing that I did not, in fact, attempt to paint it while it was in the cast.
The other thing Sarah Kate commented on was that her burn scar from the fall is still there. I’m not quite sure what she expected to happen to it while it was in the cast, but that’s what she said. Time to get back to the Mederma regimen, I guess, and add four new battle marks to the list.
Next we saw our longtime PT friend, Lisa.
Lisa isn’t Sarah Kate’s regular PT, for obvious reasons, but she has worked with Sarah Kate on and off for over eight years. She was in charge of Sarah Kate’s care post-rhizotomy in 2006, and has been tapped to lead the charge again this time. She showed us some simple exercises and stretches to do for the next couple of weeks until she can get back on her feet.
For the most part, things have gone well and Sarah Kate’s in good shape, but we do have one issue that’s a little bit concerning.
Pressure sores on the backs of both heels.
We knew they were there two weeks ago when her casts were changed, and we’ve done what we could to keep pressure off of them, but the casts were touching them all the time, and there’s only so much that can be done when she’s sleeping and not conscious of how she’s laying in the bed. It’s also possible that the car accident exacerbated the problem a little bit.
They don’t appear to be anything to worry about, but they do complicate things because we have to be aware of them all the time and we have to throw every tool in our arsenal at them so they’ll be healed up two weeks from now when we go back for an initial “get her back up on her feet” rehab session and for Botox. She’ll need to wear shoes for rehab, and she can’t wear shoes if her feet aren’t healed. 🙁
Don’t tell the doctor, but I’m trying an unorthodox remedy on her heels: Preparation H.
My dad has used it on his horses for years to reduce swelling and encourage cell turnover for their wounds, and it’s a human medicine, so why not? It’s not an open, oozing wound – more like a severe chafe – so though it may not help, I don’t think it can hurt. (Note: YMMV. I am not advising you to try it.)
We arrived home Tuesday night around 8:30 and Mr. Andi and I spent about an hour trying to figure out what we could use to keep her heels off the bed that would stay with her no matter how she moved during the night. Mr. Andi’s brilliant solution? Stuffed animals!
On the right leg, a teddy bear wrapped in Ace bandage; on the left, a tiger about to be wrapped in Ace bandage. Worked like a charm! After a bit of digging in her room on Thursday, I found another bear that’s a better fit so the tiger has been retired.
Botox isn’t that bad. It’s more the anxiety of potential pain than pain itself. I’ve turned down numbing agents when they’ve been offered since I’ve been told that THOSE are what makes the experience worse, and I don’t do well with cold/freezing sensations. However if they get a trigger point which is both good and bad there is some additional pain/residual soreness.
Cast removal freaks me out. I can’t ever hear the saw from any distance and I start shaking and sweating. There’s a theory as to why I have such a phobia, since I have no clear memory of why, but I won’t share it, just in case I cause PTSD in someone else. I always have to make a deal with the person taking off casts, if they cut off a toe (or anything else) I get to cut off a finger. My surgeon thinks I’m nuts but the techs seem to be understanding.
I don’t know… for me, Botox is painful, although not excessively so. They did use a numbing agent, though, so maybe that made it worse (That’s interesting, I’d never heard that theory). I do think the anxiety/ expectation of pain plays a big part, plus I was always on my stomach and could never tell exactly when the shot was going to go in. I’m okay with cast saws, though. In fact, I kind of enjoy the “tickling” sensation.
Anyway, Sarah Kate’s legs look great, and hope she has a speedy recovery!
She’s had it before – several times, actually. The anticipation plays a part, of course, but when she was very small and had it she screamed like crazy, and she didn’t know what was coming until it actually happened. I wonder if some places are more painful than others, like with tattoos?
This girl gets prettier and prettier by the day. Glad she is out of those casts, and hope she doesn’t get too bored waiting to get back on her feet! BTW — that photo of them all in the bed is ridiculously cute — Nathan looks adorable in that little pose!!
That is his “go to” pose every time he lays down. My dad and Sarah Kate are actually copying him!
I think her feet are gorgeous!! I have ridiculously fat feet and I can assure SK, hers are not freakishly skinny. They are perfect! (and I’m jealous! 🙂 )
I think Prep H sounds like a great idea too! Can’t hurt to try.
I have short, wide feet and toes, too, so I understand! But if you had to find shoes to fit those freakishly narrow feet, you wouldn’t think so highly of them. 🙂
You might also want to try a pool noodle cut in half the long way, and then using an ace bandage to hold it in place.
We considered the pool noodle, but they really aren’t big enough or flexible enough to work with the knee immobilizers, too. I think we considered and discarded just about every possibility in our house – it was too late to go to the store after we drove back, so it was kinda like that scene in Apollo 13 where the engineers dump all the stuff on the table. This is what we have to achieve this…
I use stuffed animals as prop pillows for a variety of reasons. My two favorites, which work so well friends from my support group have run out to buy some, are Pillow Pets. But when I was getting pressure sores under my heels after my last hip surgery, my mom would slide a piece of upholstery foam cut into a rectangle shape under my calves/ankles every night. Worked quite well.
We have a pillow pet! Only one, though… Since I posted, we’ve changed out her “props” and are now using a foam thingy that was some sort of IT packing material that Mr. Andi found at work. They’ve worked perfectly.
I’ve had Botox too (for medical reasons, but it was the same stuff that gets used for cosmetic reasons, I believe), and it certainly does not feel nice. I would imagine that is largely because the needle is disturbing the muscle though, not because of the contents of the needle.
Do you always call Sarah Kate “Sarah Kate” or do you sometimes call her “Sarah” when speaking to her?
We always call her Sarah Kate, but she gets “Sarah” sometimes at school or other places like that.
I’m new to your blog and found you guys by way of All That Max, but I just had to leave a comment. First off, I love your writing style! Second off, I very much understand where your daughter is at right now- we discovered I had a skeletal issue when I was 17, then at the ripe old age of 23, I was diagnosed with a genetic skeletal disease (I’m lucky and only have it one femur). It’s required 5 hip surgeries (if Sarah Kate, or you, are ever curious, there are post-op pics and X-rays on my blog under the tag “MFD”) and it triggered a rare crippling pain disorder. I walk with forearm crutches these days, complete with nifty decals and shock absorbers, and use a wheelchair on occasion when I have to.
But thanks to a surgical implant in my spine that we just did back in late December, there’s a chance I’ll be able to walk short distances unaided again! I started PT for that last week and will be doing intensive warm water PT for several months to strengthen up, with a team I know perhaps too well at this point, lol. PT is never easy, but as I’m sure you know very well by now, a great team makes it infinitely more tolerable.
I’ll be rooting for you guys, especially Sarah Kate, during the months to come. Best of luck!
Good luck to you!
I am not a pharmacist, just a lowly nurse 😉 but we use trypsin balm called Xenaderm to prevent pressure sores on bottoms and it draws blood to the surface of the skin, also promoting wound healing-sounds perfect for your situation. I am not sure if it is available over the counter or if you can get it through a prescription? I learned about its wound healing properties through our wound ostomy nurses.
Sounds like she is doing awesome!!
That does sound perfect, but it appears to be script only. 🙁 We will inquire about it on Tuesday morning – not much we can do until then.