Author: D W

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…

I’m afraid to type anything that might jinx anything else.  So let me back up, first.

When I arrived at the hospital this morning, DH filled me in on the rough night Titanium Girl had had.  While talking things over, Dr. C. called and asked how our daughter is doing.  I told him about the poor pain control yesterday afternoon, the point of hitting a 10.5 on the pain scale, and the general difficulties with pain management overnight.  He was concerned and asked if the current pain meds are touching her pain, to which I said they didn’t appear to be.  We also talked dietary issues; the general surgical team was looking to allow her clear fluids today, and Dr. C. was fine with that with the added option of carbonated drinks. I  didn’t say anything, but I figured we should probably avoid those for now until we see how things go.  I told him she’s been working hard with PT, but could not yet walk unsupported.  He spoke immediately to Nurse K. and shifted her meds a bit.  Nurse K. went to get the new med (actually one she’d previously be on, but still oral), and Titanium Girl told me she’d wanted me all night long.  I told her with it being the weekend, I’d stay overnight if she wanted me to.  DH asked if I was sure, and I said yes, and I hoped it didn’t bother him, but sometimes a girl just needs her mom.  I’ve had good sleep the last several nights and can handle some disrupted sleep tonight if need be.

I checked in with Nurse K. (who, by the way has been our day nurse for 3 days now, and the consistency has been nice), and we talked over ways to juggle the different scheduled and by-request meds.  She’s been really good at planning that kind of thing out to the extent we can.  We helped Titanium Girl with standing and walking just a bit in the room.  Before walking back to bed, she dropped my hand and Nurse K.’s hand and suddenly took a couple steps on her own.  I freaked a little, because I didn’t think she was supposed to do that without PT, and I wasn’t sure she was even ready.

“What are you doing??” I asked.

“I’m walking unsupported,” she replied, as though stating the obvious.  Because she was.

We helped her back to bed and almost immediately received visitors: friends D. and B. and my mom.  B. brought some activity books and projects for Titanium Girl and a geek crossword puzzle book for DH and me; I’m going to try to leave some of those for him to do.  D. and B. had to leave, and PT. J. soon arrived.  We talked over our game plan with Titanium Girl still trying to get on top of pain management this morning.  As we spoke, Titanium Girl was falling asleep, so PT J. said we could just do some PT in the afternoon.  Nurse K. came up with a great plan for what meds we could juggle when, based on when PT J. planned to come back.  We had a nice visit with Grandma, and Titanium Girl seemed to be overall more comfortable, though she couldn’t or wouldn’t quantify her pain level at that point.  We had a surprise visit from Spinal Cord Monitoring Nurse E., the nurse who’d monitored Titanium Girl’s spinal cord for all three surgeries.  She’d stopped by just to check on her and say hi, which I thought was seriously very sweet.  She was a nice constant across all three surgeries, and Titanium Girl really brightened to see her.  It was different to see her in regular clothes and hair down compared to scrubs and cap, though!

The nurse manager J. stopped by to discuss how things were going. We talked over pain management, the GI issues, and Titanium Girl’s mobility.  She’ll be following up on some of those pieces if need be.

Grandma had to leave, and it was time for Nurse K. to help Titanium Girl up in preparation for PT.  She walked 30 steps–UNASSISTED, and without PT J.  I was floored.  Her pain management plan seemed to be working well, and she sat for awhile even before PT J. got there.  She complained of some back pain when PT J. arrived, but I told her she probably needs to get up and walk to help work out the back pains.  PT J. suggested walking a complete circle around the unit, which would be the longest trip yet for Titanium Girl.  She wasn’t sure she wanted to go that far, but I stressed how important it is for her to be upright and walking now. She actually started coughing some, which is good, since she’s been in bed for so long.  We took off for a circuit around the unit, and while she wasn’t entirely unassisted, she did very well. The second half of the circle, I had to increase my pace because she was starting to walk really fast.  After returning to the room, we helped her into bed for some well deserved rest, and I talked with PT J. about some accessibility issues for once we return home.

Friends “Auntie” J. and “Grandma” K. came for a visit bringing a stuffed toy for Titanium Girl and chocolate for me. I tried to sneak eat the chocolate and ended up dropping half of it, which was probably my justified karma for trying to eat candy while Titanium Girl can only drink fluids. Bad Mom.  While there, they got to see her walk around the room before returning to bed, so she’s been pretty active today.

I’ve seen more of Titanium Girl’s usual personality throughout the day, and overall her pain has been much better controlled.  While we’re spotting her on either or one side, she’s able to walk unassisted.  PT. J. said she’s perfectly fine to continue this without her.  I feel like her progress moved forward quite a lot so far today.  However, we’re still fighting the GI issues thanks to the meds, and I’m still not sure she’ll be able to come home tomorrow.  We are seeing progress, but it’s still an issue.  On the other hand, Titanium Girl really REALLY wants to go home soon, so that fire in her belly might just spring her free sooner rather than later…

I arrived at the hospital this morning and DH caught me up on the night’s events.  Things hadn’t been too bad until one of the teams ordered an x-ray, and the tech who showed up to do it proceeded to shove the x-ray plate under Titanium Girl without letting her log roll on top of it or get a nurse for assistance. Needless to say, it was a very painful ordeal.  DH raised a stink and eventually talked to the manager in radiology, but didn’t feel the concern was taken very seriously.  I put that on my list of things to follow up on.  Dr. C. had seen Titanium Girl briefly and was overall pleased with how she’s doing.  He will not be in on Friday, but told DH he’d call later today.

I called radiology and left a message for a manager to call me back.  She called back shortly afterward and told me I was on speaker phone with her and someone else who had done at least one other x-ray on Titanium Girl.  I wasn’t entirely certain why this other person was part of the conversation since she wasn’t the x-ray tech in question, but I laid out my concerns and said that a child with two thoracotomies, two ribs removed, and a posterior fusion with rods,should NEVER have an x-ray plate shoved unceremoniously under her back without getting assistance and letting her roll appropriately.  I suggested the tech needs training and relayed that DH had earlier complained without feeling the complaint was taken seriously.  She emphatically assured me the complaint was being addressed and was absolutely taken seriously.  Not sure what else I could do or say at that point, I left it at that.

Titanium Girl had a fairly good morning.  We had a visit from Pastor M. that put a smile on her face.  I’d been given the go ahead for her to be able to suck on hard candy or chew gum, and while Pastor M. was there, I took a moment to run down to the gift shop for some gum since the spearmint I had wasn’t Titanium Girl’s favorite flavor.  PT. J. came and we got Titanium Girl walking–albeit still supported–down the entire hall and back, which is quite a distance when you’ve been through everything she’s been through in the past week.  She took a brief break at the end of the hall, sitting in a wheelchair for a few.  Unfortunately, she sat down a bit hard, and her back started hurting her some.  But she  made it back to the room, seemingly walking faster back.  The effort again took its toll, and once back in bed, sleep came on pretty quickly.  She knew we were expecting another visitor, though, and as she started to drift off, she made me promise to wake her up before Miss A. left if she came while she was sleeping.

A. brought me lunch, and we chatted a good long while, which was a welcome break.  Then Titanium Girl got a nice surprise when some volunteers brought by a therapy dog nearly as big as a horse.  She was a great dane, and very very sweet. It was a double bonus for her to wake up to Miss A. and the therapy dog.

Titanium Girl’s pain pump was discontinued today, and she did well until around 3:30 when her back was really getting painful.  I don’t know if it was the shift in medications (her oral pain med was also changed), or the rough sit down from the morning (or a combination?), but as PT J. came back for her afternoon physical therapy, she was in tears and saying she couldn’t do PT.  Her pain level was a 10.5.  She’d taken a pain pill, but it hadn’t kicked in yet.  She could have some valium, but the nurse was afraid it might make it harder for her to do PT. PT J. suggested she go ahead and have it since she was clearly in so much pain.  We practiced her focus and breathing, and she felt like the valium took the edge off.  I encouraged her to do our planned longer walk, but she clearly wasn’t up to it with the pain.  She offered to walk a shorter distance outside the room, then wanted to go back to bed.  PT J. thought it was a fair compromise given how she was feeling.

At some point in there, I realized the room phone had been knocked off the hook; I’m sure if Dr. C. tried to call it would have been during that time, as I never did hear from him, and he’s been extremely good about follow up otherwise. I mentioned to Nurse K. that we may need to check in at the beginning of the shift with Night Nurse K. regarding pain control overnight, as I was concerned with how things were shaping up.  She slept for awhile, but woke up in pain.  We practiced lots of focusing and relaxation, and she’d managed for awhile.  DH’s parents arrived to visit shortly before DH and Boy Child did, but unfortunately, there wasn’t much visiting with her in so much pain.  DH brought a gift my college friend TG sent Titanium Girl–a Ms. Marvel graphic novel.  She sent a Tiny Titans graphic novel for Boy Child as well.  Titanium Girl appreciated her book, though wasn’t able to spend a lot of time yet reading it with her pain.  Boy Child was literally laughing out loud at his; can’t wait for Titanium Girl to get the same enjoyment out of hers.  DH and I talked about pain management and strategies for overnight.  I left him with some things to follow up on with docs making the rounds in the early morning.

At this point we’re looking at possibly discharging Saturday, but I’m having a hard time believing she’ll truly be ready even then.  She hasn’t eaten in 10 days because of what the medications have done to her system, and she is not currently allowed to eat.  She’s hungry–starving really–and that’s not helping her mood and possibly impacting her pain tolerance.  I’m not sure if she’s supposed to be able to walk unsupported, though I would think that’s the game plan.  However, she still very much needs support and assistance when walking, and I don’t think the lack of food is helping that.  So while there’s still progress being made, we’re also somewhat stymied.  It’s more than a little frustrating, and I just hope she has an ok night tonight…

There was so much to tell before and with that last surgery that I completely forgot to post the following exchange we had with pre-titanium Titanium Girl while waiting for her to be wheeled back to the OR.  She had had her usual narcotic pain relievers, and they were preparing to give her the versed for the trip into the OR.

Pre-Titanium Titanium Girl: Can we turn off the light? It’s so bright…
Me: No, but I can shield your eyes. [places hands over eyes] Does that help?
P-TTG: No….cause the light’s hitting me everywhere.
DH: Oh noes, the photons!
Me: So are the neutrinos..they’re going through you, too. Do you feel them?
P-TTG: [looks at me trying to determine if I’m being serious or not]
[Nurse administers loopy juice on top of narcotics she’d already had]
Me: Oh hey, you have your versed now, maybe my neutrino joke will be funny.
P-TTG: [glares at me]…..
Apparently even versed could not make my neutrino joke funny.

Before I left the hospital last night, one of Titanium Girl’s favorite nurses from our previous floor stopped by to say hi to her.  It was a really nice surprise and boosted her mood.  DH once again took the night shift, and for the most part it went well.  But the pain meds have just really hit Titanium Girl’s belly hard, and it’s something that continues to be an issue.  Thankfully, she’s starting to get away from some of the meds, so that should help.  When I got to the hospital this morning, DH gave me the overnight update and we spoke with the Dr. B. The Thoracic Surgeon and his resident about the game plan.  DH then went home to sleep, and I settled in for what I hoped would be a day of PT and walking.

PT J. came mid-morning, and she got Titanium Girl up and walking out of the room door with each of us supporting her on either side.  She circled around the area around her room, then back in the room to sit up for a bit.  She said she should sit for 30-60 minutes, and I said 60 sounded good.  I made it my mission to be the task master if need be, because I know we need forward progress at this point.  Titanium Girl actually took another short walk around the room after PT J. left, then sat in the chair for around an hour before heading back to bed.  She’s hitting the pain pump less often and even refusing oral pain meds when she feels she’s doing ok. She’s also off the oxygen, maintaining her levels even when she sleeps, no doubt thanks to the decreased narcotic pain medication.

Dr. B. The Thoracic Surgeon came back to check on Titanium Girl, and he said he wasn’t too worried about where she’s at right now.  A nurse friend of ours stopped by and visited just a bit.  Dr. C. also called into the room to check on her, and I reported she was walking and sitting up lots, which he was glad to hear.  He asked if I’d seen her back, and I told him I’d not gotten a great look, but that her shoulder blade prominence definitely looked better, and that he does beautiful work.

By this point, we were coming up on PT J.’s second visit, and this time she had her walk a bit farther down the hall.  Titanium Girl wanted to stop at the nurse’s desk, but I said she could make it a bit farther.  When she said, “But you said I could stop here!” I told her, “J. may have said that, but I didn’t, come on.” She made it pretty close to the point I suggested, then we turned around and headed back to her room where she told PT J. that I was being a mean mom.  I’m ok with that.

After getting her seated again, they changed out her bed for one that goes lower and will be easier for her to get in and out of.  She didn’t want to sit for longer than a half hour, though I told her she needs to sit up for as long as possible. She made it an hour, mostly because she dozed off and I dragged my feet calling the nurse for assistance.  Her nurse came in to see if she was ready to move, and we helped her back to her bed.  She’s doing much better with walking already, and she even said that walking seems to be easier now.  She received a delivery from the gift shop, a gift from S., a coworker of DH’s.  It contained a stuffed ape with a hospital gown that says, “Get Well Soon” along with some cards and candy.  Having done a lot of work today, she drifted off to some well deserved rest.

I arrived at the hospital this morning to relieve DH, and he slept a bit before driving home. I showed Titanium Girl the t-shirt I’d gotten for her as a surprise: a white tee with the periodic table listing for titanium.  She seemed to like it and not think I was too silly for getting it for her.  She had a great nurse in ICU today, Nurse S., though because of all the different surgeries, it was hard for her to find a comfortable position and to decide what would work best for her.  They confirmed we would be moving to a regular room today, though they were waiting on orders for it.  Our spine surgeon had already approved it, but someone else needed to sign off too.  My friend and Evil Triplet (yes, there are three of us, muhahahahaha) L. stopped by with awesome coffee for me, and friends T. and D. brought me a very delicious lunch and visited for awhile.  Seriously, these things mean so much, I just can’t even tell you.

Nurse S. mentioned that the bed Titanium Girl was laying on belonged to the ICU, and that she’d have to be moved to a different bed before going to a regular room.  I mentioned this was the bed they rolled her out of the OR on, that they’ve never transferred her any other time before going to a regular room, and that transferring her from one bed to another was going to be unnecessarily painful.  She went to check with someone else, and that person came back to mention that, again, the bed belonged to ICU.  I said, again, the bed came from OR and that transferring her would be painful, and that if they wanted to wait until after she started standing tomorrow to switch it out when she didn’t have to be slid around on three incisions, that would be much more preferable.  That person went to talk to someone else who apparently told her not to worry about it.  Score one for Mamma Bear.

PT stopped by; I wasn’t sure if they were going to wait to get her in a regular room first, but no, Dr. C. is in full task master mode and wanting to get that going.  And that’s just fine by us.  PT J. said they’d be in twice a day, and this morning she’d just be sitting up.  After a pain pump shot, PT J. and I helped Titanium Girl log roll to her side, then I helped swing her legs out as PT J. gave her a hug and helped her sit up.  It was not easy.  After a week laying down, she was light headed as they told us she’d be, and it was hard for her to hold her head up.  But she did it.  I wanted to take a picture for DH, and even a picture of her back for him, but she really didn’t want pictures at all.  I peeked at her back as I was helping hold her steady, and while it wasn’t a great look, it definitely looked better from what I could see.  The shoulder blade prominence looked miles better than it had, and the lower hump was gone.

Titanium Girl reached her endurance limit, and we got her repositioned back in bed.  The effort pretty much exhausted her, and she slipped off to sleep.  PT. J. left me with a handout on spinal fusions that talked about things that can and can’t be done during the healing period as well as some exercises that should be done.  There are some interesting things in there I hadn’t thought about, like modifying movements when she brushes her teeth.  Since she’s not to be bending over for awhile, she’ll need to bend her knees to spit in the sink.  And of course log rolling to a sit to get out of bed will be required for quite awhile.  PT J. assured me this would all become pretty second nature for her.

Nurse Practitioner S., whom we’d had in ICU the morning after Titanium Girl’s first surgery came to talk about meds and transition to the regular floor.  With all surgeries behind her, Titanium Girl will be transitioned from a constant dose of IV pain meds with pain pump for breakthrough pain to scheduled oral pain meds every 4 hours with pain pump at lower dose for breakthrough pain today.  She’ll also remain on the muscle relaxers and valium for muscle spasms.  Tomorrow she’ll transition further to oral pain meds only when requested, and I think that still includes pain pump for breakthrough pain.  She was hitting the pain pump less today, so I’m pleased to see this progress.  She’s also getting pretty good at taking pills without needing slushies or jello to get them down with.  With medication plan in place, we headed to a regular room, this time on a different floor than we’d been on before.

Nurse E. took over from ICU Nurse S., and she’s been wonderful.  My mom came for a visit as we got settled in, and Titanium Girl was more awake for this visit. Not long after she left, PT. J. came back for more work; Titanium Girl wasn’t terribly thrilled with this notion, but it’s got to be done.  The plan for this visit was to sit up, transition to a chair next to the bed, sit there for a bit, then transition back to bed.  Again, this was not easy, but she pulled it off.  We told her today would probably be the hardest day, and every day and PT visit will get easier as she grows stronger.  The effort again sapped her strength, and napping quickly ensued.  I see so much strength in her, it’s amazing.  When she’s in pain and I tell her to focus and relax, she does.  I can’t imagine facing down the pain she’s facing at 12, but she’s fighting through….

Around 1:15 or so, we got a call into the room saying Dr. C. was looking for us.  We figured we had another hour, but just as has happened each time before, he’s been out before expected.  We headed to the surgical floor and he was waiting for us.  He said he had to take L4, there just wasn’t any other way.  And he said, “There comes a point where I have to stop beating myself up over it and just do the right thing.”  He obviously fought for it; he clearly wanted to preserve L4, but in the end, it just couldn’t be done.  He estimated her residual curves at around 35 degrees top and bottom, which is better than 50% correction of her 84/91 degree curves.  Remember that the goal was never to perfectly straighten but rather to balance the spine with a secondary goal of her being able to walk around in regular clothing without any noticeable sign of scoliosis.  And as he put it, “I could correct her more.  And I could paralyze her if I did.”  He said her lower hump is completely or almost completely gone.  The upper shoulder blade prominence is at least 50% corrected; this shouldn’t be noticeable in regular clothing.  The shoulders were markedly lopsided with one higher than the other before surgery, but they should be straight now.  There were no spinal cord issues during surgery.  She’s also taller, but I’ll stay mum on how much he estimated until we can truly measure.  Besides, we might start a betting pool there–how many inches did Titanium Girl grow in 4 hours??

She’ll be receiving at least one of the directed donation units of blood to make sure all her blood counts are good going into recovery and healing.  We are so thankful that so many people offered to donate blood for her.  And while we’re on that topic, if you didn’t donate for Titanium Girl but still wanted to, the Red Cross always needs blood 😉

Going forward, she’ll be in ICU overnight.  She may get up and at least stand this evening, though she’ll need a lot of assistance, because she’s been laying flat in bed for nearly a week.  She’s likely to be light headed on the attempt.  Then it’s progressing to walking.  Lots of walking. The more the better in the coming days.  He still anticipates we’ll go home by the end of this week.  I’m sure there’s more, but that’s a lot of it.

At 12:09pm, they called to say the hardware installation–hooks, screws, and rods–was wrapping up, and she’s doing well.  She is officially Titanium Girl in both mettle and metal.

We’ve received two calls, now.  The first came at 9:40 saying she was asleep, doing well, and the procedure had officially begun 10 minutes prior.  The second came at 11:15 saying all continues to go well.  It strikes me, for probably the millionth time, the things they’ll be doing to her today, and have already done to her, to straighten her unfathomably crooked spine and make her well.  It’s crazy and incredible, and we’re fortunate to be able to access that kind of treatment and care.  It’s also not easy becoming a super hero.  She’s endured so much in this past week; she was clearly made of titanium even without Dr. C. fusing more of it to her spine….

Our night nurse K. came in to start preparing things for transport, along with some other folks.  I’d mentioned to her that they’d done a chest x-ray at the last minute last time, and in keeping with prior precedent, they apparently signed an order for chest and abdominal x-rays at 6:35.  A number of painful minutes passed as she was rolled several times and placed on two different x-ray plates.  Still not as bad as the trip to fluoroscopy hell, but not pleasant either way.  I told Nurse K. that last surgery, they called to tell Previous Nurse K. to leave the pain pump going for Girl Child about 30 seconds after she shut it down.  Another nurse in the room spoke up and said they were definitely leaving it in place this time.  I’d taken some stuff out to the car earlier in preparation for our moving to the surgical waiting area, but the nurses said census was down and we could probably leave the non-valuable stuff behind and come get it later.  As we started rolling out the door, I mentioned that we would do just that, and Girl Child piped up with, “DON’T LEAVE MY CANDY!!!”  You can see where her 12 year old priorities lie. I ensured her no one would take her candy.  She’s so ready for chocolate and can’t wait for the clear to eat real food again.  Nurse K. wished us luck and promised to come visit Girl Child even if she wasn’t her nurse.  Girl Child told her she and Previous Nurse K. are both her favorites.

After our gentle-as-possible-but-still-bumpy ride up to the surgical floor.  Dr. C. was waiting somewhat impatiently when we arrived, asking if there were problems getting her up there (he’s been quite punctual throughout this process). I  mentioned that they called for chest and abdominal x-rays at the last minute and that took awhile.  He apparently had not ordered them, so I guess that was the thoracic team.  But regardless, we thanked him again for his efforts to save lumbar levels if he can.  He said he would be very surprised if he was able to stop at L3 when all was said and done, and that they’d case conferenced Girl Child since her case is so extreme.  He told us, “With a 90 degree curve, 99 times out of 100, you have to go to L4.”  But he also has to see what it looks like when he opens her up, so he will still do what he can.  I am definitely less confident he’ll be able to stop at L3, though I desperately hope he can.  But at this point we have to trust his expertise and skill, and thankfully we do.

We next met with the anesthesiologist, the same Dr. S. who handled Friday’s anesthesia.  We asked about whether or not the plan was the same, and for the most part it is.  She said she has some tricks up her sleeve, including using a “whiff” of ketamine if needed to counteract any narcotic habituation and reset the pain nerve feedback loop.  This may actually help her past surgery time so that she needs a bit less narcotic pain reliever afterward.  Apparently Dr. S.’s background includes work in the military (this somehow didn’t surprise us), and she told us ketamine has been shown very effective for injured vets who are on “literally a keg” of narcotics for pain relief as a way to decrease the amount they need.  She said they probably won’t wean from the pain pump for 48 hours before moving to oral meds.

Given the length of this surgery (5-6 hours from open to close) and the fact that she’ll be face down during that time, she will be quite puffy by the time we see her.  It will go down quickly, but we need to be prepared for that.  Also, there’s a chance she won’t be able to have the breathing tube removed immediately after surgery due to the puffiness, and if that’s the case, Dr. S. will leave her sedated until it’s ready to come out, possibly till the next day, so she will not have to experience the removal of it. Dr. S. also said Girl Child needed to have her blood re-typed/crossed since those test results are only good for 72 hours (like your blood type changes??), but she had no intention of doing that or adding IV’s or other things until after she was asleep so as to limit her movement and pain as much as possible.  She spoke very kindly to Girl Child and answered some questions she had about the medications she’d be getting and when she’d be getting them.  She also said she would almost certainly transfuse her with one or more of our three directed donation units, because she wants her counts looking great heading into healing time afterward.  To be honest, it’s been kind of surprising and interesting that both anesthesiologists have covered a lot more ground than simply the sleeping-during-surgery part.

While speaking with Dr. S., the anesthesiologist from our first surgery (Dr. J.) stopped by to say hi and check in on her because she’s been following her progress.  Another pleasant surprise was Spinal Cord Monitoring Nurse E. who has followed Girl Child for each surgery to watch her spinal cord functioning.  Girl Child likes her a lot, and Nurse E. has been able to bring a smile to her face each time.  I have to say again that the medical team with few exceptions have been very caring throughout this marathon.

An assistant gave Girl Child her dose of versed, the “loopy juice”, and we told her we loved her and gave her some gentle hugs.  She’d ridden up to the surgical floor with the stuffed puppy a friend gave her, and I said I’d take it back with me and bring it back when she was out, but Dr. S. very kindly said to let her keep it with her, it was no problem.  We said another round of I love you’s and watched them wheel her away, this time without a tear in our eyes. I guess we’re just kind of numb at this point.  A nurse walked us out to the waiting area, and we headed back to the regular room to clear it out of our stuff.  One of the nurses who’d helped prepare her for transport saw us and said she’d just put a note on the door telling people not to clear it, because census is low and there is a chance Girl Child will come back to the same room.  DH asked if we could just camp out there while we waited, and she said that was no problem.  Unless they revert the room to an overflow ICU room, I can’t see Girl Child coming back here immediately, but I appreciate the ability to just sit here away from noise and crowd of people in the surgical waiting room….