Month: December 2014

Merry Christmas from Titanium Girl, DH, DW, and Boy Child!

November 17 marked Titanium Girl’s final surgery to correct the two right angles in her spine, and December 17 marked the first month since that surgery officially made her Titanium Girl.  It also marked her first follow-up appointment with Dr. C.  But first, let’s recap what November 17 ultimately gave to Titanium Girl:

Pretty striking, no?  The first image is her first x-ray taken in August 2014, and the second is her last x-ray before leaving the hospital Nov 23, 2014. Titanium Girl left the hospital that day with a 7 inch incision on her left side; a 4.5 inch incision on her right side; a 13 inch incision down her back; 3 drain wounds; missing sections of 2 ribs that were relocated to her spine as part of her fusion procedures with donated cadaver bone making up the rest; literally dozens of bruising needle marks along her arms with a few on her legs and scalp for good measure (some of those bruises are still there on her arms a month later); 9 hooks; 9 screws; and 2 titanium rods.**  Not a day goes by that I’m not thankful for the remarkable advances in medical technology and skill that we have access to today.

So, the follow up.  Our appointment time was 10am, and we were asked to get there by 9:45.  We got out the door in plenty of time, but managed to hit every bump in the road, which is still painful for Titanium Girl.  To top it off, I realized about halfway there, that I’d forgotten to grab her pain pills, and she’d be due for more meds at 11.  We’d intended to walk over to the hospital following the appointment to donate one of the galaxy lamps that were so helpful to Titanium Girl while she was there, but seeing how difficult the half-hour ride over was, plus time sitting in the waiting room, I knew we’d have to save that for another day.

Thankfully, Dr. C. is generally quite prompt, and shortly before 10 we were taken back to meet first with the assistant.  There were the usual questions about how she was feeling, whether she had any numbness or tingling, etc.  Then they took her back for a couple of x-rays.  Her pain level was increasing, so she lay down on the table while we waited for Dr. C. Upon entering, he greeted us with his usual handshake and genuine smile and asked if he knew us, since we looked so familiar.  We agreed we must know each other from some place, wonder where? ha ha.

I helped Titanium Girl off the table, and Dr. C. asked if she was going to talk to him.  She smiled and said yes.  Then he asked if she was mad at him, and she smiled bigger and said no.  He asked if she wanted to kick him, and she laughed, shook her head, and said no.  He took a look at her back and the incisions and pronounced that the remaining steri-strips can be removed because the incisions look great.  He noted her back looks really good, with some residual fullness at the upper right, but improvement there.  He took a look at the x-rays, which looked like she’d been standing funny when they took them, but a comparison of all the hooks and screws showed that nothing had moved.

He asked Titanium Girl how he could help her, and she said she wanted to know what her curves are now.  He immediately set about measuring them, asking us to remind him if he’d estimated at the time of surgery (he had–35/35 was his guess then).  Due to the positioning of the hardware, it’s a little difficult to get an exact measurement, and there’s a bit of room for measurement error there anyway, but he measured her out at 35 thoracic and 41 lumbar, which is pretty darn close to his estimation.  And while that sounds like a lot of residual curve when you hear the numbers, just look back at the x-rays and see the difference (a picture’s worth a thousand words, after all).  Curves below 45-50 degrees don’t require surgery, so she’s essentially corrected to below-surgery thresholds.  And the bigger picture is that Dr. C. shaved 49 degrees off her thoracic curve (58% improvement) and 50 degrees off the lumbar (55% improvement) when 50% correction is considered a win with such big curves.  And that’s if her curves going into surgery were only 84/91.  They weren’t measured after the initial August measurement, but I had my suspicions that they increased in the months we waited until surgery, so it would not surprise me if the correction Dr. C. achieved is actually even greater than the official numbers.

I did ask if the residual angle at L4 was a problem, and he said no.  He showed us how her head, shoulders, and pelvis are now in a straight line as they should be, which was of course the biggest goal of the correction–a balanced spine.  I mentioned her tendency to carry one hip higher than the other which she appeared to have done during the one x-ray today.  He took a look again to be sure everything was good there, and she stood just fine in front of him.  He did caution us not to be too concerned about things right now during this healing period, and he suggested having her look in a mirror and shifting herself to stand straighter since her body isn’t used to how that feels yet.

We of course talked about pain management.  She’s been on a muscle relaxer in addition to her pain pill, but she hasn’t been having muscle spasms the last couple weeks, so Dr. C. said there’s no need to continue taking it.  We’d also shifted her to a pain pill to every 6 hours rather than every 4 in an effort to let her (and us) sleep more at night and to see how she did with less medicine.  When we asked about continuing in that vein, Dr. C. turned to Titanium Girl and asked her how that was working for her.  She answered that she liked getting more sleep.  He redirected and asked if it was enough for her to control her pain.  She thought about it and said she thought every 4 hours worked better for her, and he said that isn’t a problem.  He checked in with her about her rib pain, and she emphatically told him they still hurt quite a lot, which didn’t remotely surprise him. He thinks she’ll be on pain meds at least 8 weeks given everything that was done to her.

We mentioned having her play her clarinet to improve her lung functioning, as well as increasing her walking distance (she’s up to 0.25 miles regularly and did 0.4 miles the night of the band concert).  He wasn’t concerned about lung functioning at this point and didn’t think the clarinet would further improve anything, and he didn’t seem concerned about specific distances for her to walk, though the quarter mile sounded fine.  His main concern was for her to walk every day, and he said it would be good for her to sit up for 2 hours now and only lay for an hour at a time during the day.  Our main take away was that we’ve perhaps pushed her to do more and to do it more quickly than even he would expect. It was a good check on our expectations, though it was also helpful to have some concrete time limits on laying vs sitting up.

Our last discussion point was about returning to school.  Dr. C. said (completely seriously), “You guys weren’t looking for her to go back to school any time soon, were you?” and DH and I just looked at each other and both said, “Uh…yeah, January”.  He nodded and said, “Ah ok, yes, January sounds fine.”  But he began thinking out loud and mentioned how the start of school following Winter break is really just 2 weeks away, and did we think she would really be ready to return in that time?  We told him we had our doubts, and he turned to Titanium Girl and asked her what she thought (as an aside, I really appreciate that he has always included her so much in the conversations about her care, and that he’s completely validated her concerns, her experiences, and her reported pain level).  Titanium Girl also expressed her doubts about being ready in 2 weeks.  I asked if he thought returning to school January 5 would be too ambitious, and he said he thought it probably would be, and that mid-January might be more realistic.  He also agreed with our thoughts of her returning to half days to transition back initially.  We briefly covered accommodations she’d need to return to school, and he was on board with anything we thought would help.  He suggested meeting again in a month to see how things were going and discuss school more then.  With thanks and handshakes, we said our goodbyes.

A few minutes later, Dr. C.’s assistant E. brought us the school accommodation  list.  We realized Titanium Girl had never had her height or weight taken that visit, and she really wanted to know how much height she officially gained.  E. said she’d do it for us on our way out, so DH went to move the car closer while we did that.  Oddly enough, she measured only 3/4 an inch taller than before surgery, which seriously doesn’t seem right given how many people comment about how much taller she is now.  Dr. C. had estimated he gave her a couple inches in that last surgery, and obviously his estimates have otherwise been pretty good, so we were more than a little doubtful.  On the other hand, she was measured on the same device she’d been measured on before surgery (at 5 ft even), so it wouldn’t be due to a difference in equipment.  Regardless, I measured her in the evening around 5ft 1.5″, which sounds much more plausible.  It will be interesting to see how much height she gains from leg growth in the next couple years…

 

**Partridge in a Pear Tree sold separately.

Today was the funeral for a guy I went to college with.  We weren’t super close, but we went to a very small school.  There are high schools with more students than our college had, so it’s not hyperbole to say that everyone knew everyone else there.  P. had piercing blue eyes and a nearly perpetual smile that lit up his face.  He was one of the Good Guys.  Last Sunday he was in a horrific car accident, and he sustained a massive head injury that the doctors could do nothing to fix.  P.’s wife had to face what must have been an unfathomably gut wrenching decision to terminate life support on what was her husband’s birthday.  She held off until the next day; he passed on from this world leaving a devoted wife and twin kindergarteners during a holiday season that will forever be tied to loss for them.

When I signed the guest book at the funeral home this morning, a sorority sister of mine and I noticed that there was a medal on display that mentioned organ donation.  We sat together and listened to the words of P.’s pastor, trying to keep our composure since both of us had forgotten tissues.  Then the pastor said that P. was an organ donor and that in dying, he helped 8 different people receive the gift of life.  Eight people might have a Christmas with their families only because P. won’t have a Christmas with his.  Composure was out the window.  In dying, he gave others the chance to live; what better, more fitting gift could there be at this time of year?

But what does this have to do with Titanium Girl?  Her surgeries involved fusing both the anterior (front side) and posterior (rear side) vertebrae together.  To achieve this, bone material is placed between the vertebrae, and this eventually grows together to form a solid column of spine.  Her anterior procedures made use of her removed ribs for this, known as autologous donation, because she donated it to herself.  However, those sections of ribs weren’t enough to fuse the posterior side after fusing the anterior side, so they used donor bone from a bone bank for the posterior procedure.  Someone gave her the gift of their bone to stabilize and fuse her spine together so she won’t be hunched over and unable to breathe for the rest of her life.  Someone’s death may not have given her life in the same, more immediate way that a heart, liver, or kidney might, but it gave her life just the same.  It gave her increased lung capacity and lower stress on her heart. It’s not unlikely that it added years to her life and certainly health to it as well.

Titanium Girl required blood after the final surgery, and we’d prepared for that possibility ahead of time by arranging several family members to donate specifically for her.  Thankfully, she didn’t need all the units that were donated for her, so the leftover units were released for others to receive.   It was important to us that none of that blood would be wasted, that someone else could have the gift of life as well.

DH and I have long been registered organ donors, since the time they started letting you put that on your license.  And we’ve told our friends and family that we’re donors, an important step, because some hospitals won’t proceed without asking next of kin for permission, even if you’ve indicated you’re an organ donor on your license. We’re also blood donors whenever we can be.  We feel very strongly about organ and blood donation, and I hope you’ll consider becoming an organ donor and letting your family know of your intentions.  P.’s death is one of the most tragic I’ve known, but I couldn’t help but think of the amazing gift he left to others, and how our very own daughter benefited from someone else making the same decision.  Hug your loved ones tight; life is precious.

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.