Author: D W

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.

The Saturday after Thanksgiving is when my mother’s side of the family has a get-together, and initially I’d thought Titanium Girl would be up to going to it this year.  But given how wiped out she was after Thanksgiving, and knowing the A. Family get-together was at a restaurant where Titanium Girl might not be able to sit or stand comfortably for very long, DH offered to stay home with Titanium Girl while Boy Child and I went to the reunion.  Titanium Girl didn’t like this plan, thinking she’d be lonely with DH dozing between her medication times, so she talked her brother into staying home with her.

I went to the shindig, which was a bit of a nice break completely on my own, especially since I didn’t get to go last year.  I caught up with far-flung relatives and showed off the amazing before and after picture of Titanium Girl’s spine.  They sent me home with fried chicken and pumpkin pie for the kids, which worked out great for dinner.  On the way home I picked up some coffee shop drinks for the kids.  Titanium Girl was in better spirits and proceeded to drink most of her drink in pretty quick order.  She told me she can now get into bed without any help–score!  Getting up is still a challenge, but progress is progress.

The mail brought a card from our friends the H. Family, with personal notes that made Titanium Girl Smile.  It also brought a giant envelope full of cards that was truly overwhelming.  A high school friend of mine, C., had asked if her kids could send Titanium Girl some cards they’d made her, and I said absolutely!  What I wasn’t expecting was cards from her kids to both Titanium Girl and Boy Child, as well as cards from an entire 3rd grade class at C’s kids’ school.  There’s a banner for Titanium Girl to hang up; letters and cards asking her all kinds of questions about things she likes; pictures; and wishes for her to get better.  All this from kids hundreds of miles away who don’t even know Titanium Girl, only heard about her from a classmate who herself only knows of Titanium Girl because her mom and I went to school together.  It was really humbling to see such an outpouring of well wishes springing from that place of pure kindness that exists in young children. Titanium Girl will definitely have lots of thank you notes to write!

Saturday after Thanksgiving is also an informal get together in the evening at my Uncle D.’s, though we don’t often get to go.  However, the timing was looking good, and with a nap under her belt and Titanium Girl’s spirits much improved, I suggested she go with her brother and me and let DH have a break, especially since the out-of-state cousins would be there only one last night.  She was feeling pretty good and initially agreed, but closer to the time to leave, her stomach started feeling “off”, so she decided to stay home.  Boy Child and I enjoyed the visit with everyone, but I couldn’t help thinking that I’m going to have to push Titanium Girl some to get her seeing people, especially her friends, and to get her walking more than she currently is.  It’s been harder with it being the holiday weekend, but she seems to wave off visits too easily, and I think being around people would be good medicine for her now…

This past week was Thanksgiving, and our family truly had lots to be thankful for with Titanium Girl home and growing stronger (and straighter!) day-by-day.  We went to Thanksgiving at my sister’s house, equipped with lots of extra pillows and blankets, and Titanium Girl actually held up a lot better than I expected she would.  She went up and down a full flight of steps for the first time since before surgery.  She sat up for awhile and ate reasonably well.  She was surrounded by lots of family who were all happy to see her, especially her younger cousin E. who planned out an agenda (quite literally) of things to do with her which included “snuggle time” first and foremost as well as the presentation of a very special Build-a-Bear for Titanium Girl that E. had personally picked out to go along with a similar one she’d created for herself.  My out-of-state cousins and their wives presented Titanium Girl with a basket of goodies–books, nail polish in her favorite colors, candy flavored lip gloss–that she absolutely loved.  She even squeezed in some gaming time.  Other than needing to lay down some and taking things slowly, she could have been mistaken for any of the other kids at Thanksgiving.

But obviously she wasn’t, and after about 4 hours, she was ready to go home.  We planned our exit around her medication times, drove home, and got her into bed.  She had a rough night where the pain medication didn’t seem to be kicking in much for her, and the next morning didn’t seem much better.  I knew the spine center was closed for the holiday still, but had an on-call who could handle things if need be.  Dr. I-Forgot-His-Name-As-Soon-As-He-Said-It looked through her chart and we talked over options since her prescriptions aren’t simple things that can be called in.  I wondered if the increased activity could have exacerbated things for her, and he agreed that was a distinct possibility. He suggested doubling her pain pill, though I wondered if that might be a bit much for a kid of her weight.  He didn’t think so, but he did say it would be perfectly fine if I’d rather just add a half pill rather than another entire pill.  Of course, this means we’ll run out of the script sooner than intended, so I’ll still need to call in on Monday to talk to our surgeon, but this would at least get us through the weekend. She didn’t need the extra half-pill every dose, but it did seem to help the rough patches, and she definitely got better sleep Friday night than she had Thursday night.

It’s been a few days, and we’re finding out what our “new normal” is.  Titanium Girl’s days (and nights) revolve around medications and trying to achieve a comfortable position and temperature (the meds make her alternatively hot and cold in quick succession) for longer than a few minutes.  The places where her excised ribs formerly were located hurt, understandably.  Her back hurts, understandably. The right shoulder blade, which, before surgery, was pushed out by a section of her spine, aches, understandably. Sometimes the meds help and she gets a span of sleep, though it’s always interrupted by medications.  She needs them around the clock, and due to the timings of the various pills, there are sections of the clock where she gets something every hour for a few hours before a couple hours’ break. We have a spreadsheet DH and I sign off on to keep track of which med is due when.  I hate to wake her for meds if she’s sleeping well, but if we don’t stay on top of them, she gets behind the pain curve, and it’s harder to get out of pain.  Even when staying on top of the med schedule, sometimes the meds don’t help so much, and she has to use other coping skills like focusing on her stars from her Galaxy Lamp.  She’s getting tired of pills, understandably; to say she’s tired of the pain is an understatement.

But it’s not been entirely negative.  While she’s still dealing with pain, it’s usually at a 5-6 on the pain scale with occasional peaks at 7 or 8.  Her pain before the surgeries was often 5 or 6, and in the hospital it peaked at 10.5.  She’s walking a bit straighter with more level shoulders as the muscles get stronger and more used to being where they are now.  Her hips still seem more off, but I’m telling myself to be at peace and to be patient as those muscles probably need more time and strength to hold her hips straight.  Her body’s doing so much to heal and strengthen right now, and it’s really a herculean effort it’s putting forth.  Any one of her incisions would literally be a mortal wound a hundred years ago, and she survived three of them; that’s kind of crazy to think about in terms of how far we’ve come with today’s medical science.

The last of the gauze dressings came off of the drain sites yesterday, so she’s down to just steri-strips on the two side incisions and the spine incision. She was able to take her first real shower (as opposed to sponge baths previously), and while she needed some help with that, she got through it fine (this is actually quite a feat; some kids pass out or nearly pass out with their first shower due to the length of time standing and the heat of the water).  She’s fully mastered the unassisted log roll, and she can get herself into a lying position, though getting up from it is more difficult.  She’s acquired some really high level mental coping skills that would be difficult for a lot of adults to obtain.

She hasn’t had visitors yet–either friends or family–because she just hasn’t felt up to them; I hope she’s ready for them soon, because I saw how much they lifted her spirits in the hospital, even when she wasn’t feeling her best.  I’m also not entirely sure how she’ll do at Thanksgiving.  It’s at my sister’s house, and she’ll likely have to go through all the same machinations of trying to find comfortable positions as she does here, and in a crowd of people, that’s likely to be harder.  We’ll probably go late and leave early; she wants to go–we all do–but her endurance probably isn’t up to the task for very long.  But who knows?  Our Titanium Girl could just as easily exceed our wildest expectations of her stamina.  She’s already done that and more given everything she’s endured to this point.

My cousin S. spent the night to cover Boy Child so I could get to the hospital early and be together with DH for any discharge planning discussion.  When I got to the hospital, Titanium Girl was in a bit of pain.  I told her we should probably get her up and walk a bit to stretch out those back muscles.  I had brought her slip on tennis shoes, and they gave her better stability than the traction socks she’s been walking around in.  We did a circuit of the unit, saw one of her favorite nurses from her previous unit (Nurse K. No the other Nurse K.), then got her back into bed.  Weekend Night Nurse L. went off shift, replaced by the same Weekend Day Nurse L. we’d had the previous day.  DH wanted to grab some breakfast from the McDonald’s downstairs, and Titanium Girl asked for some hotcakes.  She ate a bit of those, then the official hospital breakfast arrived with cinnamon pancakes and the “purple grapes” Day Nurse L. had requested specifically at Titanium Girl’s request.  The pancakes didn’t appeal, but the grapes were great!

Dr. M. the Spine Fellow came while DH was napping, so I woke him up and we talked discharge.  We talked about our pain management plan and discharge meds and GI issues/progress, and he pronounced Titanium Girl ready to go home, probably before lunch. Our next step was a trip down to the x-ray lab for standing x-rays of Dr. C.’s handiwork.  Day Nurse L. brought the wheelchair, and we set off for basement of the hospital.  On the way down I asked if we could detour to PICU on the way back up, because there was an autographed poster of Jennifer Lawrence as Katniss Everdeen there, and  Titanium Girl loves Hunger Games (she was Katniss Everdeen for Halloween this year).  Once the films were complete, Day Nurse L. obligingly took us to the PICU, and we got a picture of Titanium Girl with the Katniss poster.  It was only a couple minutes’ extra time, which can be a lot to a busy nurse, but it meant even more to Titanium Girl.

Dr. C. called to discuss discharge about 20 minutes after we got back to the room and after having already checked in with Dr. M.  He reminded us to avoid ibuprofen and other NSAIDs (these interfere with the fusion process), and he advised us to make sure Titanium Girl is drinking lots of fluids and taking vitamins, especially D3 for her bone growth.  She may also need some protein shakes after having not eaten in so long. He said she may be hunching over a bit more toward the right where the more painful of the two thorocotomies and excised rib is, but that should improve over time, and her posture should improve with it.  He asked for probably the hundredth time if there was anything else he could do for us, and I said no and thanked him profusely. At that point I was looking at the clock and hoping the timing worked out so that Titanium Girl could have a last pain pill right before the trip home.

DH took a load of things to the car and moved it to the patient pick up area.  My eye was still on the clock as time on Titanium Girl’s current dose of pain medication was running down. Weekend Day Nurse L. came in with a student nurse to remove leads, check dressings, and take out the last IV.  We got Titanium Girl into some regular pajammas for the trip home, then Nurse L. showed us the standing x-rays.  I took a picture so Titanium Girl could see better and so DH could see when he got back.  The correction is really dramatic to see, especially compared to the two right angles she previously had in her spine.  I still see an angle between what I think is L4 and L5, and I don’t know if that’s attributable to the way Titanium Girl was standing (it’s still hard to stand fully straight) or whether that’s just the best that could be corrected.  We’ll need to ask Dr. C. at follow up in a few weeks if that angle is truly there and if it sets Titanium Girl up for a greater chance of further fusion in the future (she already has a chance anyway), but for now she should be fine.

Time was draining away along with Titanium Girl’s last pain pill, and Titanium Girl was nibbling and occasionally dozing.  A different nurse came on the call speaker asking if we wanted her to have a last pain pill before the trip home, and I said absolutely!  Nurse L. came in with it as well as the discharge paperwork and prescriptions.  Without my even saying anything, she’d pushed discharge back just a bit specifically so that Titanium Girl could get that last dose in for the ride home.  Talk about a great nurse!  She went over discharge instructions with DH and me, told us what to look for if there were problems with the incisions and what to do with the steri-strips (basically nothing; they’ll fall off on their own), when she can have a real shower rather than the sponge baths she’s been having, and who to call for what issues.  She also had already written down the times she’d last taken her various medications so we would know when we can give her the next doses when we get home. We signed off on the discharge paperwork, and I felt, not for the first time, as though we were taking home a newborn. Would we be able to get her comfortable at home? Would we be able to keep her pain managed?  Would we even be able to get her in and out of the car ok?

The next 15 minutes or so until the transport person arrived passed interminably.  But she finally arrived, and we got Titanium Girl loaded up and packed with pillows for comfort.  The trip down was blissfully uneventful, and we helped her into the car, sitting down in the seat, then pivoting into the car without twisting (quite a lot easier said than done).  We packed pillows around her as she needed and left for home, DH trying to avoid every bump in the road where possible.  After a brief detour to the pharmacy to drop off her prescriptions, we made it home, helped her to pivot out of the seat and stand, then walk into the house.  As I walked with her to her bedroom, she took a deep breath and said, “I love this place.” Couldn’t have said it better myself…