Month: November 2014

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.

 

Finally. We made it home at around 1pm, and I was so happy. 🙂 I ate McDonald’s chicken nuggets and fries for lunch, then had the slightest bits of Hershey’s Cookies and Creme chocolate bar. I napped for around 2hrs while watching a movie. I suspect that it was almost over, but I didn’t see the end either way. I started to have some serious back pain from my 12-14in. incision. We got some pain meds into me, but I was still in super bad pain.

I ate half of a bowl of mac’n’cheese for dinner, then took my pain pill. I played around on my computer, then I got in my bed with Mom and we watched several episodes of one of my favorite shows, Good Luck Charlie. I’m planning on watching a few more and falling asleep to them.

Later this week, I get to see Mockingjay Part 1 or sometime soon. I’ve read all three books, seen the first two movies (the only ones available on BluRay/DVD).

I think I’m gonna go watch those episodes now. And fall asleep in the process. 😉

-Titanium Girl

For the first time in 12 days, the family is all home together. Whew.

Now we get to go back to the way things were, right?

We’re on to the next phase of things… figuring out what “normal” is going to be, at least for a little while.

TG realized her preferred means of logrolling off the bed will be to roll to her left, since the rib on her right side bothers her more. So, we needed flip TG’s bed around so her feet are against the wall, and her head is at the foot of the bed. The alternative would be to rearrange her entire bedroom which, well, that’s just not going to happen quickly.

We’re also expecting she’s going to crash on the couch in the living room from time to time. We’re probably going to need to rearrange the room a bit to make things easier for her for a couple weeks.

We’re also sorting out when she needs to take her meds throughout the day to keep her pain under constant control. One med is every 6 hours, another is every 4 hours, and a third is every 4 hours, but with a max of 5 doses in a 24 hour period. Because the KISS principle is for sissies.

DS and TG were a little upset earlier this evening. They decided they wanted to play Minecraft together… right before DS needed to be heading to bed. TG may not have school tomorrow, but life is moving on as normal for DS. Neither of them liked that, but… oh well.

The cat was most confused when TG arrived home this afternoon. After two weeks of wondering where everybody was, she was somewhat aloof… possibly because her person smelled different. She warmed up quickly enough, and spent a good deal of time curled up on a pillow on TG’s bed. She came out for a good long cuddle with daddy, and she seems like she’s settling back in.

Tomorrow: time to pull the house back together, get a bunch of stuff moved around, do some shopping. I’ll be back in the office for the first time in a couple weeks. Boy child will get on the bus in the morning, and we’ll all start moving on with our lives.

But for tonight, we’re all home. DS is in bed, I’m watching Sunday Night Football on the couch, and DW and TG are in the other room hanging out. And even if things aren’t completely what they once were, it’s a good sight better than having the family split in between two places.

And I’m glad for that.

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…

Short blog entry this morning. She’s eating nearly normal foods this morning. Last night, she enjoyed some bits of pumpkin bread provided by J and cousin B — we weren’t sure if she could have the chocolate yet, so we picked out the chocolate bits, but she nommed a bunch of bread.

This morning, Mickey D’s hotcakes, and another pancake from the hospital food service. Also, red grapes (not white!).

Her oxygen sensor was removed last night, and her EKG/breathing sensor was disconnected this morning.

DW had a good talk with the attending this morning, and we’ve gotten cleared to bring TG home. At this point, it’s just a matter of paperwork and formality. So, time to start packing up, and getting ready to bail. We’re hoping to roll out by lunch.

W00T!

TG and just wrapped up a walk around this side of the hospital floor. We bumped into Nurse K (no, not that one, the other one) and Nurse Y, both of whom were thrilled and excited to see her up and walking around. Nurse K said she would stop by a little later this evening to say hello and get caught up.

TG has made some good progress in the past couple days. She’s been cleared to start advancing her diet some at the nurse’s discretion, and they made the decision tonight to move her onto more of a BRAT diet. She’s munching on Honey Nut Cheerios now, and she said they never tasted so good. The nurses also disconnected the IV drip, so she needs to drink more fluids… hopefully that will also encourage things to get going.

We’re very quickly getting to the end of our stay at the hospital, and it couldn’t come soon enough for any of us. We were hoping today would be the last day, but she’s not quite there yet. Hopefully tomorrow morning we’ll get the green light to go home, and then the mad dash will be on. DW already took a bunch of things out of the room so we don’t have quite so much in the morning.

More good news: with TG getting up and moving around more, they don’t need to make her move position in the middle of the night. Looking at her med schedule, she might get a run of uninterrupted sleep from 11 to 3ish in the morning. It’ll be the longest she’s slept without disruption since a week ago Monday. Here’s hoping.

It’s all good stuff… I, for one, welcome a return to some semblance of normalcy 🙂

Last but not least, TG says she’s not quite up to dictating a post until after she gets home. So, it might be a couple more days before you get to hear from her.

DH and Boy Child brought me dinner last night, and knowing Titanium Girl could not yet eat solid food, I took it downstairs to eat so as not to eat in front of her.  The timing worked out well, because we were expecting visitors from our Girl Scout troop, and I was able to meet them downstairs after I ate and bring them back with me to the room.  M. and her daughter S. brought wonderful gifts from the troop, including a huge pile of books (each girl had donated one of her own books for Titanium Girl to read), a crafty project to make stress squeeze balls with balloons and play-doh, and a gorgeous blanket that all the girls in the troop had made together.  Titanium Girl was holding up well, and the girls were able to visit together while we grown ups did the same. Dr. C. called to check in on Titanium Girl, and I gave him the progress report.  He was pleased at the direction she’s heading.

After our friends left, we had a surprise visit from friend T. who happened to be visiting other family at the hospital and was kind enough to stop by for a bit.  Afterward we spent some time together as a family, DH and Boy Child left for home, and I settled in for the night with Titanium Girl.  Our initial Nurse R. for the night was transferred to another unit a few hours into the shift, and Nurse L. took over.  Titanium Girl had some problems getting comfortable throughout the night, and Nurse L. said this happens with some regularity at night for these kids.  She also suggested that Titanium Girl should try to stay in one position for 10 minutes or so to settle into it, even if it’s not completely comfortable at first, because the back and forth movement can lead to more discomfort.  She helped Titanium Girl reposition with some pillows, and Titanium Girl found that Nurse L. was right that she would be more comfortable if she stayed put for a bit.

She did have a rough patch, though, and Nurse L. suggested adding one of the previously used pain pills on top of the one she was on. I asked to be certain the two meds could be combined, and after a discussion with the pharmacist, she reported they could be.  After giving it to Titanium Girl, the night went better, but I did wonder in the back of my mind if the extra med would create more GI issues for her.

Around 8:30 in the morning, Dr. M., a Fellow with our spine surgeon’s practice, stopped by to check in on Titanium Girl. I spoke with him about the GI progress we’ve seen, the need for the second pain med over night (and that it worked well), need for a valium pill vs liquid, and eventual at-home pain management plans.  Dr. C. himself called an hour or so later.  After he laughingly asked me if I ever go home, I promised him I have and do, but that last night Titanium Girl just wanted her mom.  We talked over the conversation with Dr. M. and the improved pain management and GI issues.  He thinks she may be ready to discharge Sunday, but she’ll need to do plenty of walking and sitting up today.  He asked if I thought she looked straighter or if I could tell yet. I told him sometimes she stands up extra straight and I can tell she’s taller, but then those weakened muscles lose their stamina and she hunches over a bit again.  I reported her shoulders do look more level, the lower hump is gone, and the shoulder blade prominence is definitely much improved.  PT J. had told me that soft tissue sometimes takes 6-8 weeks to get used to their new places and strengthen adequately to hold, and Dr. C. confirmed this to be accurate.

Titanium Girl took a bit of a nap and woke up grumpy and a bit behind the pain curve.  Weekend PT came, a different J. than we’d seen through the week.  Titanium Girl did not like her as well, and she didn’t particularly feel like doing PT at that point.  But we reminded her she still had lots of work to do today and that Dr. C. wanted her up and at ’em.  Today was also the day planned for walking up and down some steps.  Weekend PT J. asked how many steps we had up to our house, and we told her 5 from garage to mud room, so her goal for PT was to walk up and down 5 steps.  She handled the steps well, though I was actually a bit nervous watching her and not being right next to her.  She then had to walk the entire circle around the unit, which she wanted to speed walk until Weekend PT J. told her to slow down.  After we got back to the room, Weekend PT J. had her do some exercises of her arms and legs, encouraged her to continue these at home, and pronounced her graduated from PT.  Needless to say, naptime ensued after all this work.

In the afternoon Titanium Girl’s friend K. visited with her mom S., and she brought a new and improved ™ Simon game (why do they need to “improve” all these things from my youth??) and some slipper socks.  The girls chatted while S. and I talked, and Titanium Girl was holding up really well.  Another friend of Titanium Girl’s was planning to visit later in the afternoon, and Titanium Girl promised to walk more after that visit.    We spoke with Day Nurse L. about Titanium Girl’s diet, and she got permission from Dr. M. the Spine Fellow to advance from clear liquids.  Day Nurse L. offered some graham crackers, and Titanium Girl gratefully and dutifully began nibbling on one.  Friend G. and her mom M. came, bearing more gifts; it’s more than a little humbling all the gifts and kind gestures so many people have done for Titanium Girl and our family.  G. and M. got to see her move from her chair to bed, and the girls visited together while M. and I caught up. I  was glad to see Titanium Girl so much herself throughout the afternoon.

True to her word, after G. and M. left, Titanium Girl took another walk around the unit, adding an extra bit at the end so that she walked a farther distance than this morning.  She rested for awhile, then DH and Boy Child came back to the hospital.  DH and I talked about pain management options with Day Nurse L. and one of the nurse managers. We all desperately want Titanium Girl to go home, but we also know her GI issues aren’t fully resolved, and she’s only just begun eating bland foods.  The last thing we want is to go home then have to go back.  DH and I decided I would come back to the hospital early in the morning so that we can both be part of any conversation about discharge.  My Cousin S. thankfully agreed to come to the house to cover Boy Child so I can do that with one less distraction.  With that plan in place, Boy Child and I exited stage left for the night…