Month: December 2014

Titanium Girl’s overnight was again a bit rough. And because her nights are consistently more difficult pain-wise than her days, she ends up sleeping poorly or not at all overnight, then sleeping a large chunk of the morning and early afternoon away to make up for it.  I’m not sure how we can help coax that into a more normal schedule, and maybe her body just won’t be able to do that yet, but I’m already feeling like we need to do something soon-ish to fix or improve things, because January (and her return to school) will be here before we know it.

For lunch I offered to make oatmeal, which is usually a favorite with Titanium Girl.  But I had ulterior motives, because I figured I could easily sneak some extra calories into it using all 2% milk and butter rather than water/milk.  Then I realized I had some heavy cream in the fridge, so I put some of that in there, too.  It was a decent sized portion, and she ate it all, so bonus.

After lunch I suggested she try out her clarinet.  She hasn’t played it since before surgery, and I’ve wondered for awhile how much her lung capacity and playing would be impacted by the thoracotomies/rib removals and the extended time in bed.  But I’ve also thought getting back to the clarinet would ultimately improve her lung functioning and help her lungs recover from being deflated for surgery and getting gunked up from being bed ridden.  The severity of her curves pre-surgery actually was decreasing her lung capacity from what it should have been, anyway; the anesthesiologist from her first surgery confirmed this just looking at her x-ray.  So in theory, with her curves greatly improved, her long term lung functioning–once fully healed, anyway–should improve as well.

Predictably, this first post-surgery session on the clarinet wasn’t easy.  Once she got her breath support going, she sounded quieter on it than before the surgeries, but her tone was overall better than I expected.  She worked on a new piece of music her band will be playing for the concert Titanium Girl will sadly miss playing in next week (we’re planning to attend, though!).  She handled it pretty well, all things considered, but stamina is an issue, and after about 5 or 10 minutes, she was literally breathless and had to put her music away.  The effort took it out of her, and she proceeded to nap for a couple hours.  But I was ultimately encouraged by how well she’d done.  And the cough she’s had since before coming home from the hospital (a by-product of being bedridden for a week) actually seemed better through the evening.  I’ll take it.

 

DH’s work schedule has shifted to nights, but with it being the weekend, he was actually able to cover Titanium Girll’s night time meds while I slept with me returning the favor in the morning.  The upshot being that we both got good sleep this weekend, which was helpful.  But for Titanium Girl, it was another mixed night.  Not as rough as some, but still no walk in the park.

This morning I left a message for our surgeon regarding the pain management issues through the weekend.  When he called back, I relayed how things have been with increased pain issues at night, possibly from being up and more active during the day.  He said this is actually quite common, and he doesn’t disagree with adding the extra half pain pill if needed.  I mentioned a couple possible side effects we’ve seen with the increased dosage, and he agreed it was likely the medication, but not a concern overall.  He also said due to the three surgeries (whereas most scoli kids only have one), Titanium Girl is likely to be on pain medication for a couple months, so there’s no worry about still needing them to the extent she still is at this point.  “Remember, we didn’t just straighten bone in there, but also all those muscles and ligaments, and those take time to get used to where they are now.  There’s nothing going on here in what you’re telling me that worries me at this point.”  In general I’ve tried to keep those worries in check, but it definitely was good (and helpful) to hear complete calm and reassurance from the guy who’s been doing this for 20 years.  Dr. C. asked if Titanium Girl is eating, and I said yes, though more like a bird since her stomach can’t hold much after not eating for 12 days.  He suggested protein shakes to keep her intake up.  As an aside, he mentioned Titanium Girl’s “x-rays look really good, very balanced.”  I commended his incision, which we get more glimpses of as random steri-strips fall off.  The spine incision is so tiny it seriously looks like a healed up cat scratch.  I told him I couldn’t compare Dr. B. The Thoracic Surgeon’s work since those steri-strips haven’t begun falling off yet, but we’re very impressed with Dr. C.’s work.  We ended the conversation with a check-in on how much medication Titanium Girl has left before her follow up appointment; he’ll be getting us another written script for pain meds to carry us through that visit.

Later in the day, Titanium Girl’s back was tense, and despite walking, it hadn’t loosened up, so I suggested a shower.  As I helped her afterward, she looked in the mirror and said she looks skinny.  I’d thought she looked a bit thinner, certainly more “peaked”, but I hadn’t thought she’d lost more than a few pounds.  But she decided to jump on the scale and it proclaimed her 10 pounds lighter than she was a couple weeks ago.  Wow.  She didn’t have 10 pounds to lose as it was.  Definitely need to push the calories.

Titanium Girl’s been getting herself into bed and up and down in chairs, but today she managed to get herself out of bed on her own.  A physical therapist friend of mine, K., had suggested moving the kitchen chair I keep by the bed up to Titanium Girl’s shoulder area to use as a bed rail to hold onto as she pulls herself up.  Picture trying to get out of bed without being able to bend at the waist or twist in any way.  What Titanium Girl has to do is log roll first, crossing her arms and pushing with one leg till she’s on her side.  Then she has to simultaneously swing her legs down and off the bed while she lifts herself sideways (remember, no bending or twisting!) into a sitting position at the edge of the bed.  No easy feat with a 7 inch incision on one side, a 4.5 inch incision on the other side, and a 13 inch incision down her back.  The way she’s accomplished it before this point was to hug onto our necks and/or shoulders while we pull her sideways into the sitting position.  But with the chair by her shoulders, she was able to grab on and pull herself up on her own.  Progress!

More progress began tonight as she started her homebound studies with her math/science teacher Mr. F. We were able to arrange to do it via Skype, which was very convenient.  We’ll also be checking in with her English/Social Studies teacher Ms. P.  She held up well this evening, though this first session was only a half hour or so to ease her into it.  Before the surgery, both her teachers said they have no real worries about her getting back up to speed, as Titanium Girl is an excellent student.  As expected, she picked up on tonight’s concepts without any problems.  She’ll have a fair amount of  catching up to do before January, though, so we need to keep her on track between now and then.

All in all, it was a good day, and a planned visit from a friend tomorrow gives Titanium Girl something to look forward to, so hopefully that will be another good day in the making.