Titanium Girl

We saw the urology resident this morning. She was a fast-talking, very business like young woman who we immediately liked.  She was reasonably confident that the stone had passed into Titanium Girl’s bladder since her pain had not returned overnight, so today was to be a waiting game of drinking and straining the output. The urology resident stressed to TG that she needed to drink lots–preferably water–if she’s to pass the stone and go home.

We set up to pass the time. Divergent was listed in the available Teen Movies through the hospital’s network, and neither of us had seen that one, so we watched it.  A volunteer brought Valetine’s cards for all the kids currently in the hospital, and that was very sweet. I pushed her to drink more more more, which she didn’t particularly care to hear, but she did try her best.  She also didn’t particularly care for the hospital food. She hadn’t gotten the chance to eat hardly any of it in November, but this time she was stuck with it.  Except there’s a McDonald’s on the ground floor of the hospital, so junk food to the rescue!

Somewhere in there, she went to the bathroom and the stone passed! It had broken up, but they were able to strain things and send a sample to the lab for analysis.  The urology resident said she might be able to go home tonight, but she needed to drink lots to help drain her right kidney.  The resident ordered the IV fluids shut off to encourage drinking.

More time (and tv and movies) passed, volunteers came to bring donated toiletries for the parents on the floor, and the nurse checked vitals and brought her regular pain meds. A volunteer brought a therapy dog by, which was a definite bright spot.  DH came, bringing Boy Child for a visit after school.  Unfortunately, the urology resident didn’t feel that TG was drinking (or more importantly, peeing) enough, so she made the call that she should stay another night.  None of us were thrilled with that notion, but the idea that TG’s kidney is swollen with fluid was also more than a little disquieting to DH and me.  We’re settled in for another night, but fairly confident we’ll be able to go home tomorrow morning. Definitely ready to see this place in the rear view mirror…

If you had “kidney stone” in the pool of things Titanium Girl would have to deal with next, come collect your prize.

Yeah…

In the afternoon, TG had some pain in her lower right abdomen.  It got progressively worse, to the point where I started thinking appendicitis.  DH and I evaluated the situation, and I told him I thought one of us would need to take her to the hospital, specifically the children’s hospital where all her surgeries were done, since all her records are there. We decided I would take her, so I packed her up and drove there.  I drove there in a zone; we’ve made that trip so many times, it was like being on autopilot.  After parking and going downstairs to the ER, Titanium Girl got sick.  I figured this further pointed to appendicitis.

Upon walking in the door, there were a number of other people waiting, and I worried TG would have to wait a long time to be seen.  But I told the triage nurse the symptoms and that she’d just gotten sick.  She handed us an emesis basin and had us sit, but we were called only a minute or two later.  After taking vitals, she walked us back to the ER bays, looking for one she thought was unoccupied.  They were all occupied.  TG ended up on a gurney in the hallway because they were so full, but the nurses were all very kind, and we were thankful just to be in the queue to be seen.

A doctor or nurse practitioner (can’t remember which) came to do an exam and suggested appendicitis or possibly an ovarian cyst given the location of the pain.  However, she needed to do a scan of some sort, either ultrasound or CT, to determine for sure.  I was really hoping an ultrasound would be enough since TG’s been through so many x-rays already in the last several months, and thankfully u/s was the option she went with.  She got us into an ER room as they’d just opened up another wing, and she ordered a pain medication.

However, when she was talking about the pain med, it wasn’t something I was familiar with, and it sounded suspiciously like an NSAID, which TG isn’t allowed to have for 9-12 months as it would interfere with the fusion process.  As it turns out, the medication was an NSAID, and apparently an excellent non-narcotic option for this kind of pain if your kid didn’t just undergo spinal fusion a few months ago.  That there was nothing in the digital chart about NSAIDs being contraindicated for TG was a little disquieting.  Thankfully I know enough about medications and thought to ask, but if I hadn’t…?

With the NSAID off the list, the next option was straight morphine which did the trick after a couple attempts to find a vein.  Thankfully one of the nurses tending to TG had been one of her nurses during the fusion stay, so it was nice to have a familiar (and gentle!) face. Next, she had to be catheterized and have her bladder filled so things could be visualized more easily on the ultrasound. Thankfully they did this after the pain medication was on board! We finally got down to ultrasound, and she got through about half of it before the pain started coming back.  Then it was back to the room to await results and another dose of morphine.

The MD or NP eventually came back and said the ultrasound results were in and they showed something I never would have guessed: a kidney stone blocking TG’s right ureter, almost to her bladder.  Her kidney was enlarged with fluid from the blockage.  I was floored. No, she had no history of kidney stones, and there’s no family history of it either, at least nothing confirmed that we know of.  A urology doctor would be coming by to talk with us.  I called DH and let him know what the verdict was.

When the urology attending came, she said the stone was fairly large–estimated at 6-7mm–but that size was on the cusp of passable size and they thought TG might be able to pass it, given how close it was to the bladder. Since TG’s pain seemed to have subsided a little without additional morphine, they were hoping maybe she’d passed the stone into the bladder, in which case she could go home on oral pain meds (if those worked well enough for her) until it passed completely.  However, they wanted to do an x-ray and another ultrasound to check on things.

Unfortunately, the x-ray and ultrasound showed the stone still making itself comfy in her right ureter, so the urology attending said it would be best for TG to be admitted.  She said she would start her on something to dilate things and hopefully help TG pass the stone.  She also talked about pain relief and starting to bring up the NSAID again, at which point I had to again mention that she cannot have NSAIDs for 9-12 months. (Seriously, why is this not in the chart??).  I called DH and we decided it would be best if I stayed with TG overnight, so he came and brought some things for me and helped us get settled into the all-too-familiar floor we’d said goodbye to just a few months ago.

Here’s hoping this will be a short stay….

First, my Dad’s co-worker sent some questions, and Dad forwarded them to me via E-mail:

Who came up with the name TG? Did any of TG’s ribs have to be broken during surgeries? Looking back, How did it feel to know so many people were thinking of and praying for you? How many total doctors were involved through the entire process?

I’m pretty sure that Mom and Dad  came up with Titanium Girl, or “TG”. They then suggested it to me, and I liked it. The ribs had to be cut out and crushed to fuse my spine. Looking back, {and even now!!} I felt amazing that so many people, even people I barely or didn’t even know, were thinking of me and praying for me. It inspired me to push through, even when the pain was awful. I have ABSOLUTELY NO IDEA how many doctors were involved. It was THREE surgeries, so I’d have to say probably a lot. I hope that answered your questions!

Next is just an inspiring message from one of my Grandpa’s friends, which Grandpa sent me via E-mail:

“Just tell her for me that she is a hero in my book. I have been with adults who have had surgery, and not been as positive and strong and work as hard as she has. I have gone through several surgeries myself, and I know how hard it is to push yourself to get better.”

Next is a question from my Aunt: I want to know how she’s doing with the pain curve.

I’m doing good getting ahead of the pain curve, but sometimes I fall behind.

From my Mom’s Friend: Which was her favorite of the Harry Potter books, and why?My favorite HP book was The Deathly Hallows. This one was my favorite because of all the suspense and action. Order of the Phoenix is a close second, though.

From another one of my Mom’s Friends: I want to know who TG’s hero is, because TG is mine!

I don’t really have a hero, but if I had to pick one, it would be my friend H, who recently fought cancer.

From my Auntie J: How are you doing with relearning to sit, stand, get out of bed, and movement in general?

I’ve been doing that stuff for a couple months now, in a couple weeks it will be 3 months, so pretty good.

From my Mom’s friend: How tall are you now and do you feel taller?I am just over 5 foot 2.25 inches.  I don’t feel any taller, but when I stand next to my friend G, {who, before my surgery, was taller than me} I do feel taller since I am as tall as her now.

From my Grandma: What did you take away from the Scoliosis Support Group Meeting? What did you learn by going there? Are you looking forward to going again?

I learned some stuff about scoliosis, like how if you have an inward turned big toe, you may have scoliosis. I really look forward to going again, as I’ve told Mom a bunch the past week. The girls were all nice.

From my Mom’s friend: Are you taller than your mom?! What is your favorite subject in school? What subject is the most challenging for you?

I am very close to being my Mom’s height. But no, I’m not. We’re about an inch to an inch and a half apart. My favorite subjects are reading, math, writing, social studies, and band. The subject most challenging is probably science, since I don’t like much of it. Sometimes I struggle with math, but it’s mainly science. Also, I’m not a fast reader, so my ELA/Social Studies teacher’s reading challenge has been kind of hard. With my missing 2 months of school, she adjusted my requirement, so it’s been easier.

From my Grandpa: have you had any second thoughts about having the amount of surgery that you had?

I didn’t really have a choice, but if I did, no. My doctor would have had to do the same stuff to my ribs and spine, so there is no regret or second thought.I hope I answered everyone’s questions. A few of my Grandma’s co-workers are sending in questions soon, so stay tuned for Q/A With TG Part 2!

-Titanium Girl 😀

Tomorrow or Friday, I will be answering questions you send to my Mom’s Facebook page!! You can ask me anything from how I am doing to scoliosis surgery tips.

 

-Titanium Girl 😀

Shamelessly stolen from DW’s social media page:

JC > DW
(Some number of hours ago)

How’s TG doing with her half days of school? I hope its not wearing her down to bad. Still thinking of her.

DW: She’s doing pretty well. Back hurts as the day wears on, obviously, but then she’s having to be more physically active than she’s used to being at this point. Her teachers have been great with arranging schedules and materials for her, keeping her as comfortable as possible, etc. Her friends have been excited she’s back and very protective of her. They form a buffer zone around her so no one can bump her in the halls. She’s tired when she gets home, but I know she’ll get stronger every day.

Today we are going to Build-A-Bear Workshops. My Grandma gave us each some money for Christmas to spend for ourselves. So, yesterday I decided we could go to Build-A-Bear. At Thanksgiving, my little cousin gave me a bear with hearts all over it’s plush body. She even has a matching one. They each have pink headbands and white and silver dresses, with matching fluffy white boots. They each smell of strawberries, and they play Let it Go from Frozen if you press the right foot. So now I get to make my very own!!

Anyway, I got up super early, earlier than my brother, and played on my tablet. When he got up, he asked if he could play on my tablet, instead of his own. He wanted to play something I had bought that he couldn’t yet. I handed it over, asking for his. I played on his for awhile, then ate a few mini powdered doughnuts.  Mmm, they were good. He finished his game and we switched our tablets back. Then he got on the bus, and I typed this on my tablet.

My pain control is better now. Mom and Dad bug me a lot about how I stand, how my arms fall, how I walk, and how I hold my hip.  They bug me about what I eat, and they weigh me every morning.  They also bug me about school work. But we also have good times.  We all got to see Mockingjay Part 1 on Tuesday, and we liked it.  I want to see it again, a million more times!

Sorry I haven’t been posting. I’ve wanted to, but I just never got around to it until now. See ya!
Titanium Girl

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.