Month: February 2015

Let me start off by saying that I’m NOT taking the heavy narcotic pain pill anymore!! I’m taking something different that Dr. C put me on  instead yesterday. When Mom dropped me off at school yesterday, she went to pick it up. It’s a lighter narcotic, so it’s not a written script. Dr. C just has to call it in to our local pharmacy.

Also, Monday I have a Urology appointment (I tried to post about my kidney stone in the hospital, but it didn’t work. It deleted everything I’d written!!! At that point I was too tired to write and completely forgot to continue) with Dr. R for my kidney stone. (Let me back up; I had a kidney stone earlier this month, and I had to go to the ER with searing spasm like pain {yes, much like the back spasms! And I thought I was done with those…} and they had to do a bunch of ultrasounds and an X-Ray because it could have been anything from appendicitis to kidney stones). I had to take flo-max (a medicine that makes you use the bathroom a TON, and one of the major side effects is dizziness, which sucks) for 2wks. Either way, Monday I have to go into school late (and on my first day of FULL DAYS!!!) for that.

Anyways, so today we have a Girl Scout Cookie Booth set up at my school’s wrestling match. I’m hoping we don’t have to sell in the gym, because that would mean having to watch the stupid match, and listening to all the yelling from the crowd and such (my ears are still sensitive from the hospital. FROM NOVEMBER!!! Mom thinks it’s the pain pill that I just got off, but it’s probably a combo of both). Also, I have an inspiring message from my Grandpa’s friend that Grandpa E-Mailed me:

“I read the latest from TG and I have to say SHE IS REALLY SUPERWOMAN at almost 13. LOL It is a bit funny, that a young lady who I have never met, actually gives me reflection on how much a person can go through and persevere. Please let her know she is an inspiration. God bless her.” THANK YOU GRANDPA’S FRIEND!!!! And Grandpa, thanks for sending me that!! <3 😀 It’s so inspiring to know that SO MANY people are hoping for my good health and praying for my quick healing. Even people that I’ve never met, like my parents’ and my Grandparents’ friends. Every day at school, Ms. P and Mr. F ask how I’m doing and ask how my back is feeling.

In June (National Scoliosis Awareness Month), I’ll probably post most days, every day having a fact about scoliosis. (FYI: NATIONAL SCOLIOSIS AWARENESS DAY IS JUNE 27TH!!) Mom recently  found a quote by the star of one of my favorite movies, Shailene Woodley: “Some people have crooked teeth, some people have broken fingers, and I’ve got a back that has my initial on it.” -Shailene Woodley on Scoliosis. Shailene, in case you didn’t know, has scoliosis, and had to wear a brace for a couple years.

-Titanium Girl 😀

Today in 2nd Period Math, I had no back pain. This is the first time that has happened sitting up since before my backpack got heavy (in 4th Grade, when I went into the High Ability {Honors} system, where we have to carry around a TON of binders and folders) and my scoliosis occurred (in 5th Grade). Pain has gotten better and better; Saturday, my brother, Mom, Dad, and I went out to eat with Grandma and Grandpa, and I was up for 4-5hrs before pain kicked in. Today when Mom dropped me off at home to go to a meeting at my brother’s elementary school, I lay down for about 40min, then came out to the living room to play Minecraft PC and listen to The Fault In Our Stars soundtrack. Dr. C did mention pain would last for about 3-4 months, and that I would have to take a pain pill for about that long, too. I’ve almost forgotten to take it for a couple days now before going to school, and Mom says that’s a GREAT thing. Since I’m not having as much back pain, I forget to take it. And forgetting to take it leads to coming off of it more easily and quicker, too. Overall, I’ve been doing increasingly better with pain management and sitting up for longer without pain. Earlier, my friend L and I were walking to the elevator for lunch, and she goes, “Oh, do you need your pillow?”

I had forgotten my pillow!! “Oh, yeah! Well, umm, no, I guess not.” I replied.

“Are you sure?”

“Yeah; it’s only thirty minutes, I should be fine.” It was weird (not painful) to sit in a hard chair with absolutely no pillow. I decided to just sit forward in the chair so that I didn’t get uncomfortable. Like I said, I’m doing SOOOO much better with everything; I’ve already taken off all of the extra pillows from my bed, and it’s comfy!! 😉 I can’t wait for everything to become normal again!! I’m actually more excited about November 17th, 2015 (1 Year Mark) than my 13th Birthday!!!!

 

-Titanium Girl 😀

On November 17th, 2014, I became Titanium Girl with rods, hooks, screws, and 12 fused vertebrae. On February 17th (earlier this week), I had been TG for THREE MONTHS. Pain suddenly has been so much better, although it’s still rough if I sit up to long. Dr. C said that the pain would last for about 3-4 months, but it’s getting better already. I’m hoping that most pain is gone by the time 4 months rolls around. I’m already 1/4 of the way through to 1 year. The days have kind of slipped by me, although you would think they drag with all the pain I had. Either way, thank you everyone for all of your support!

 

THREE MONTHS!!

-Titanium Girl 😀

Titanium Girl started the band year off with 3rd chair and worked really hard for her second quarter playing test heading into November. She got word while in the hospital that she’d made 1st chair, a somewhat bittersweet accomplishment given she wouldn’t be able to play as 1st chair (or at all) for the winter concert. After 2 months off school, getting new music only recently, she practiced the heck out of the piece they were to play for the next playing test. Then she wound up back in the hospital the days they were supposed to be testing. We honestly weren’t sure how she’d do, given everything leading up to this point, but today, they had her do her test and she made 2nd chair, only a half point off from 1st. Could not be more pleased at the accomplishment and work she put into it.

Most of the time, the resident teams are doing rounds before the sun is up, but Murphy’s Law being what it is, we waited until around 11am before we saw them this morning. Businesslike Urology Resident came in with her supervisor and a couple of students. She gave Titanium Girl the ok to go home today, but stressed (very emphatically, with much verbal underlining of the words) that TG needs.to.drink.lots.of.water.  She’ll be discharged on the medication that will hopefully keep everything dilated and the affected kidney draining, and she’ll need to take that for a couple weeks.  She’ll also need to see a pediatric urologist, Dr. R. for follow up within the next week or two. I told the supervising doctor that Businesslike Urology Resident had been a great doctor, and I thanked them for their care.

They left and we waited. The longest hour is the 2 hrs between being given the greenlight for discharge and actually getting to go home. We’d hoped to be sprung free for lunch, but the lunch tray came around at noon. It did not pass TG’s inspection, so back to the McDonald’s downstairs we went.  Shortly thereafter the nurse came in, and she knew nothing about any discharge plans.  Lovely.

Sometime after 1 the nurse came back with discharge paperwork. She unhooked the monitors, told us about needing to call the pediatric urologist for a follow up appointment, gave us the prescription for the dilation med. At 1:30 we finally got to leave. TG and I are both looking forward to sleeping in our own beds tonight.

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 😀