Month: November 2014

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…

About that okay night DW mentioned… yeah, not so much. It’s been a long night.

The poor kid has hardly slept all night. The pain meds just haven’t had that same effect that they once had. She’s struggled to find ways to be comfortable most of the night. She’s dozed for a few minutes here, a few minutes there, but nothing substantive. The most comfortable we were able to make her was sitting up in the chair. Both times has given her enough relief that she’s been able to sleep.

The first time, we tucked her back into bed about 245, and she seemed like she might get some sleep. Then the nurse came in to take her vitals at 315. She confessed later that she was already awake when the nurse came in.

About 515 the younger Dr B from the surgical team stopped in, and we talked for a few. He was pleased with some of her progress, and took a note to talk with the spinal team about mixing up her pain meds to try to score her some relief. I also got the sense he was going to talk with them a bit about possibly putting her on solid foods.

About 530 or so, TG wanted to sit up again, and she sat in the chair for about 30 minutes. We got her back in bed, and her eyes were drooping, and then she was out. Thankfully when the alarm on the IV went off (again) for air in the line, it didn’t wake her up that much. This might actually be the best sleep she gets tonight.

When a doc from the spinal team swings by on rounds, I may pull him or her out into the hall just to let TG rest more. Much to discuss… food being a biggie, as well as continuing to talk about steps towards wrapping up our stay here.

PT on 2 hours of sleep will hurt, and I don’t envy TG that… but it won’t hurt as much as PT on no sleep at all.

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…

It’s been a couple days. TG’s been struggling with some pain and some other ancillary issues, but she very well may have turned the corner. She’s been using the pain pump a lot less today, and the rest of her pain meds are only on an as-requested basis. She seems to be fighting very hard NOT to use them, which is extremely encouraging.

She’s walking, albeit slowly. This is a huge milestone. She’s done physical therapy for the past couple days. Part of tomorrow will be figuring out what’s left. It feels like we’re starting to get to the end of the road at the hospital, and it’s good stuff. There’s a couple hurdles, but we’ll work through them in the days to come.

Friend S dropped off a couple gifts today. She loves them — the monkey is very soft, and she’s been cuddling it most of the day. He understands very well what she’s going through, and his counsel early on was huge in helping me personally be a lot more relaxed about things. Thanks man, I owe you… again 🙂

She’s a LOT more of herself tonight. She’s definitely not fighting as much pain, and that she’s gutting it out without anything more than the PCA pump is some incredible progress. She just had a back spasm, and didn’t even reach for the pump. This will help a lot getting her back into life.

TG is reading lots of back emails on her laptop, and starting to get caught up on the world around her.

This almost feels like a normal evening with just the two of us, except we’re here, and not in our living room.

Maybe she’ll even post tonight.  [Updated 1030pm: … or not. She finished reading, closed the laptop, was done. Bummer.]

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….

Before and After

TG just awoke after an hours’ sleep, somewhat unexpectedly.

Before I get started, let me frame this up by saying its all fine, we’ve got the appropriate people aware of things, and we’re all watching.

When she drifted off, a couple things had me a little nervous. We made a minor adjustment to her course of medication, which helped get her BP down some. However, her heart rate was still up, her one foot was cooler than the other, and she mentioned she felt cold and asked for a blanket. After tucking her in with a couple toasty warm blankets and letting her drift off, I discussed my concerns with the attending doc on the floor. She was already well aware of each one, had reviewed it with other folks, and the current stance was ‘let’s keep an eye on each.’

My take on it is her body is busy reprogramming itself after the surgery today, and I agreed with the wait and see approach. So long as we got the right people looking at things, I was fine… I just didn’t want it ignored.

Anyway… so she wakes up. She’s toasty fricken warm (Get these blankets OFF ME!), and her feet feel the same temperature again, so I can relax a little bit. Her heart rate still has me concerned, but her body is in the middle of making internal changes on its own. So… watch and wait is still the order of the day.

She asks “Daddy, I’d like to try sitting up.” She’s already been cleared to reposition the bed so it’s not completely flat any more (thanks to the hardware in her back), but this is different. She actually wants to pull herself up into a seated position.

Hell yes I’m going to support this idea.

We try. She’s starting to do it, makes a valiant first try, but to no avail. We set her back down.

She’s convinced, once again, that she’s laying on top of something. The nurse had already looked once… at great length, and found nothing underneath her. She wants me to check all the same.

So, she grabs my arm, and rolls herself over onto her side so I can check underneath her. Of course, there’s nothing there, so she rolls back onto her back.

Both of these things would have had her in anguish 18 hours ago.

We’re so close. I really want to see TG stand.

Everything quiet, check.

TG asleep, check.

A few moments of peace and quiet, check.

Time for a couple Boston Creme Milanos.

…

“Daddy?”

I lean over her. “Yeah?”

“Are you eating cookies?”

“Yes”

TG glowers furiously.

“You BETTER not eat them all.”

 

Yeah, the strength of her spirit is in good shape. She’s ready to fight. She might not want to wait until dawn to get out of that bed.