Titanium Girl

Days kind of slip by me lately; I almost missed that today marks 1 month since Titanium Girl’s first surgery.  That surgery left her with a 7 inch incision that wraps around from her left abdomen around to her back. It also removed a portion of her 10th rib, detached part of her diaphragm, and deflated her left lung.  And that was just the opening act that let Dr. C. access the anterior (front) of her lower spine where he removed disks from T11 to L3, ground up that removed section of her 10th rib, and cemented that between those vertebrae to begin the fusion process before reattaching the diaphragm and re-inflating the lung.  It should go without saying that that kind of surgery takes a long time to heal from.  And on the 14th, she had a repeat on the other side of her chest at her 6th rib.  The words of Dr. B. The Thoracic Surgeon frequently echo in my head: “Thoracotomy is no joke.  And she’s got two of them.”

I’m not sure anything can prepare you for what the healing process of a single major surgery will entail, let alone 3 major surgeries inside a week. There have been some seriously dark moments, darker than we’d ever publish here on this blog, because some things just aren’t for public consumption.  Of course, there have also been amazing moments of strength and triumph.  Titanium Girl has a well of inner strength that she’s learned to tap into at the ripe old age of 12; that can only serve her well throughout her life.  Her ability to focus herself and relax is especially impressive; some adults never master that.

Most scoliosis kids bounce back pretty quickly by 3-4 weeks out of surgery.  But then most scoliosis kids who require surgery only require a single surgery from the back.  Two surgeries (anterior/posterior) is the less common yet not unheard-of alternative.  Three is exceedingly rare, but then so is a case of two right angles in someone’s spine.  We do not do things halfway in this family; go big or go home.  I think we probably need to re-evaluate that maxim for some things 😉

DH and I are both feeling the need to focus on Titanium Girl’s physical strengthening at this point.  School is winding down toward winter break, and she’s covered a lot of what she needed to learn in this time off.  But her stamina is still low, and that double thoracotomy means her lung functioning is weak, even though her ultimate lung capacity is much greater now than before the surgeries.  After some seriously diligent school work today, we pressed her to practice her clarinet.  It was only the third time she’d played it since surgery, and it’s still very much a struggle for her.  But we believe very strongly that playing the clarinet will be physical therapy for those lungs weakened by excised ribs and deflation during surgery.  She’s also going to have to walk even more.  She’s made progress there, but the only way to get stronger is to keep doing more.  She wasn’t entirely happy to hear this; her bed is far more comfy than laps around the driveway.  But there’s no way she’ll be ready to walk the halls of her school in January if we don’t get her moving more now.  The only way out of this is through it….

 

 

The kindness and support of others continue to humble us.  Friend and fellow PTA trench warrior Miss A. dropped by out of the blue yesterday with some books and candy for Titanium Girl, just because.  College friends M. and J. sent a big box of goodies with fingernail polish, Hunger Games items, and a craft for Titanium Girl to work on.  F. and J., far flung friends of ours, made time to stop by while visiting family in the area, and despite telling them they need only bring themselves and their adorable kids, they brought a couple cakes as well (any attempt to maintain a reasonable diet lately is pretty well shot, but I don’t think I care!).   Then a package showed up randomly on our doorstep from high school friend M. and his wife T.  It had something for each of us: a Soft Kitty for Titanium Girl, Star Wars Lego set for Boy Child, USB powered (nerf) rocket launcher for DH, and a vintage Wonder Woman shirt for me (something I’d actually been secretly looking at recently since I love Wonder Woman).  Again, just because.  We’ve gotten home made cakes and soups and breads.  Titanium Girl has received cards and blankets and books and candy and crafts and all manner of things from friends and strangers alike.  Boy Child, too, hasn’t been left out.  We have never doubted the love and support of our friends and family, but the myriad ways people have shown that love and support over the past several weeks have been phenomenal.  Never doubt the impact that even the smallest acts of kindness can have on others….

Monday the 8th was a long day.  There were laps around the driveway despite continued pain in her ribs (4 laps plus the walkway to and from the driveway are 0.18 miles, just for future reference; yes, I mapped it out), a weigh-in (up 2 pounds!!), and a visit with K., my physical therapist friend who lives up the road.  She watched Titanium Girl walk and gave her some things to do to work on her walking and body mechanics.  They’re not unlike form drills if you run: marching with knees up, butt kicks, exaggerated heel-toe walking.  After trying these out even briefly, Titanium Girl’s stance and gait actually did improve.  She also stands more evenly in shoes than barefoot, so she may need to wear shoes around the house to help give her a stable platform.  K. also showed her a neat trick to get her to breathe in more deeply by pulling her elbows out as she breathes in.  She likely needs to do this more, as this may be part of why her ribs have hurt so much after the sneeze and cough episodes: her rib cage simply isn’t used to expanding that much.

After the mini-PT session, Titanium Girl begged to lay down and take a nap.  I relented; I’d really wanted her to try to get in some more school work, but she hadn’t slept well the night before, and I could see she was truly tired.  She wasn’t going to be able to process anything academic in that state.  I did make her march back to her room with knees up, just to work on at least that much.  Seeing how she was coping, both physically and emotionally, I wasn’t sure I’d be able to get her to go to the band concert she’d been looking forward to going to for weeks.  I truly believed she needed to go for the interaction with friends that would hopefully energize her.  But in order to secure the kind of seat she would need (in the back, on an end where she wouldn’t have lots of people trying to scoot past her into the row), we’d have to get there fairly early, early enough that I wasn’t sure she could physically sit there long enough to attend the entire concert after waiting for it to start.  While Titanium Girl slept, DH and I arranged with some friends to hold some end seats for us so we wouldn’t have to get there quite so early.

Then it became a matter of convincing Titanium Girl to go.  I helped her shower and suggested an extra half a pain pill.  I mentioned we had people saving seats for us so we could get there closer to the beginning of the concert, but she didn’t think she could make it.  “I’m not sure I can sit through the entire concert.  What if I’m hurting and I need to leave before the 6th grade plays?” she asked.  “You won’t know until you try,” I told her.  She picked out her Titanium shirt to wear; it has the periodic table listing for Titanium. I grabbed the meds she’d be due for during the concert, something to wash them down with, and some extra pillows then helped her into the car.

We got there about 15 minutes later than we typically would if she were playing in the concert, so we had to park farther out than we normally would.  I wondered how she’d hold up with walking the extra distance, but she did ok.  We walked into the school, down the loooooong hallway to the auditorium (getting a couple hugs along the way from friends!), and found the folks who were saving our end seats.  We got situated, and the 6th grade band soon took their places in their section in the audience (they watch the 5th graders play before they go on).  I asked Titanium Girl if she’d like to walk over and say hi to her friends, and she said yes.  She walked across the auditorium to where the 6th graders were seated, and the section practically erupted with excited greetings.  Some got up to hug her (gently), a few commented on how much taller she is now, several practically yelled out that she’d gotten first chair clarinet on the test they took before her surgery, and others asked what she’d had done and how long would she be gone.  It was a little overwhelming for Titanium Girl, but in a good way, I think.  Her band mates were genuinely glad to see her, and I think that buoyed her spirits.

We proceeded back to our seats and the concert began.  It was absolutely wonderful; the school she goes to has a truly amazing music program, and each concert is better than the last.  When her band took the stage, Titanium Girl began fingering the notes to one of the songs, as though she had her clarinet with her.  I was glad to see her engaged in that way, and having been a band kid myself, I could empathize with the difficulty of wanting to be on that stage and not being able to be.

After the concert, I asked Titanium Girl if she’d like to go back stage to the band room and say hi to her teachers.  She agreed, though getting there was a bit of a challenge through the throngs of people trying to leave.  But we made it through, saw some more friends along the way, and finally caught up with the band directors.  They were happy to see her there and asked how she’s doing.  We talked about her progress on clarinet, that she doesn’t have the volume or stamina back yet, but her tone is still good.  By this point a lot of the crowds had thinned out, and we made our way back around to the front of the school, hitting a bake sale on the way out where we caught up with yet more friends.  More hugs and catching up ensued, but by this point, Titanium Girl was understandably flagging, so we soon headed to the car and got her home and in bed.  I was so impressed with how well she held up, even when it was difficult.  We’ll need to build on this if she’s going to be ready to head back to school in January, but I have more confidence in that possibility after seeing how she got through the concert.  The best part was when she told me she was glad she went; the struggle to get her to go was worth it for that part alone.

With recovery from anything, a setback or two is to be expected and is normal. It doesn’t make it any less annoying when they happen.

TG sneezed yesterday. Later in the day, she coughed.

Such simple things. She’s been coughing and productive, and it was all normal and healthy. The problem is, the sneeze was a doozy. (Or at least, so I heard.) So was the cough. Suddenly nerve endings which had calmed down were lit back on fire. Both of her sides have really been bothering her a lot for almost 24 hours now. Getting up is an adventure in pain… which is a double whammy, because she needs to get up and walk from time to time to keep her back muscles loose.

She had managed to go Friday and Saturday without any extra doses of pain meds, which was awesome. Sunday, she needed a couple extra, and today’s looking to be about the same.

So, time to take a breath, ease up on the schoolwork and clarinet, and just heal for a little bit.

TG really wanted to go attend her band concert tonight. I hope she feels a whole lot better in the next 12 hours and can make it, because it would be a big milestone for her. Here’s hoping for small miracles.

Saturday had a full plate of activities that kept me out of the house a lot of the day.  In the morning, I took Santa pictures at the elementary school, then came home for lunch with the family.  I wasn’t home long before it was time to head out with Boy Child to do some shopping then take him to a birthday party.  But the beautiful thing is that when I got home from taking pictures and checked in with DH, he’d been on top of Titanium Girl’s eating, had her working on some math, and even got her practicing her clarinet.  I’m so glad I don’t have to be the MeanTaskmaster Parent alone….

This is a marathon, not a sprint, as a friend said a few weeks ago.  And she’s right, but it’s more like a marathon in reverse, where the famed Wall of pain, exhaustion, and self-doubt hits you first, then you slowly work your way back from it toward a place where you feel like you’re coping reasonably well and eventually even cruising along feeling great.  We aren’t cruising yet, but we’re at least not at the Wall.

Titanium Girl still requires meds around the clock, though she dropped her tylenol doses since they didn’t seem to be doing much.  The upshot, though, is that she (and we) get a few 3-4 hour stretches of sleep without the tylenol breaking things up. That doesn’t sound like much, but any parent of a newborn will tell you that’s a pretty nice run when you can get it.

School work is progressing, though I’m not sure it’s progressing fast enough.  She catches on just fine, but being able to sit and actually work for more than a half hour or so at a time is a challenge.  I’m having to be Mean Taskmaster Mom to keep her working on things.  But she did much better today, knocking out some online math lessons and some reading.

Mobility in general continues to improve.  Yesterday she squatted all the way to the floor to get something.  I hadn’t thought she was ready or able to do that, and it took me a little by surprise when she did so.  But she seems to have quickly mastered the movement all on her own, keeping her back straight and bending only with her knees.

Her weight and eating are still an issue.  She gained a pound, then lost a half pound.  We got her some Greek yogurt, which is high in protein, and some protein bars (she didn’t like the protein shakes). DH’s parents brought some home made chocolate chip banana bread, and friend C. and her mom stopped by with home made cinnamon bread, both of which have been very much enjoyed by Titanium Girl.  Last night I went on a midnight Taco Bell run because she said nachos sounded good.  She hadn’t realized Taco Bell is a 24/7 affront to gastronomy, nor that I had made many a late night Taco Bell run in my college and grad school days, so a midnight run was old hat.  Today I told her since she can’t eat a whole lot at a time, she’s going to have to eat every 2 hours.  This seemed at least feasible for her; hopefully the scale will show progress in the morning.

The excised ribs still bother her, and the right side feels like it sometimes moves in a way that she can’t describe other than to say it feels disconcerting. After she had lots of issues with rib pain this morning, I had to be Mean Taskmaster Mom and take her outside to walk a couple laps around our longish driveway; I suspect she’s laying too much and needs to walk more, and I reminded her that Dr. C. instructed her to walk walk walk.  Interestingly, after her driveway laps, the rib pain improved.  Her overall pain this evening seems better, too.

Honestly, I was feeling a little low today, because it seemed like there was a lot that Titanium Girl is still struggling with.  But looking back, there’s plenty of positive.  The Wall is still behind us…

 

Titanium Girl’s friend G. visited her yesterday after school; the two haven’t seen each other since Titanium Girl was only just starting to walk after the third surgery.  At that point, it was difficult to stand up fully straight, and while this is still a bit of an issue, especially with the leg length difference and her muscles not yet at full strength, she’s definitely standing up straighter (and taller!) than she was the last time G. saw her.  It struck me how much taller Titanium Girl is now than she used to be.  G. is fairly tall, and before the surgeries, she was noticeably taller than Titanium Girl.  Now the girls are fairly close in height.  We still don’t know her new official height yet and won’t until her follow-up on Dec 17, but the difference is obvious.  Oddly enough, her hospital discharge paperwork listed a height that was taller than her height at admission, but I don’t recall her being measured after the last surgery, so I’m not sure where that came from. Regardless, the girls sat and had a nice little chat and visit together.  Eventually Titanium Girl had to lie on the couch because her back was bothering her, but it was definitely good for her to have interaction with a friend.

After G. left, I gave Titanium Girl some homework Mr. F. had sent me for her.  She chose one of the sheets to work on, but had to work on it in bed because her back was hurting.  At the appointed time, she skyped with Mr. F. to go over some math and science, which again went well, though she had to lie down toward the end.  Ms. P. sent some things for her to work on for English and Social Studies, and I talked them over with Titanium Girl while she ate dinner.  She ate fairly well, then finished up her math paper before heading back to bed.

DH ran to the store, and while there, he got some protein shakes, a few other odds and ends that are favorites with the kids, and some eggnog, which Titanium Girl absolutely loves.  He figured high calorie egg nog might be a good option for her to pack some weight back on with, and I agreed.  She drank down a cup and a half immediately after he got home with it.  She drank a bit more later and had a couple slices of bread with butter as well; overall she ate a bit better yesterday, so I’m hoping that’s the beginning of a trend.

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.

Laughter is the best medicine.  And sleep.  Alternate as necessary.