Month: November 2014

We’re finally in and settled in the ICU for the night. The name of the game is, you guessed it, pain management. The more we can keep her comfortable and let her sleep it off, the better.

Already we’re down one set of meds — hopefully, she won’t need the pain patches any more; the chest tube that was hitting her rib was removed with the surgery today. Less meds good.

She’s sleeping peacefully, and the lights on both of our bays of the ICU are dark, so there’s only a little ambient light. The nurse turned down the volume on her monitoring system as well, so hopefully we’re in for a quiet ride. The nurse for the child in the other bay of this room already came in rather loudly to the neighbors once… a gentle reminder may be in order if it happens again.

Why yes, I will be happy to get back to a room on the floor ASAP tomorrow. How ever did you know?

TG’s vitals look really good. She’s definitely a lot more comfortable than she has been in a while, although hopefully her BP and heart rate will come down more throughout the night.

DW has gone home for another night of well earned rest, and some good cuddle time with DS. Like our family cat, he’s missing ALL the people.

TG on the other hand, when awake, is still dealing with the reality of some of the wounds from today’s surgery. There’s no way to roll to escape them now. Grumpy child is definitely grumpy. And in pain.

I’m glad she’s not adamantium girl. I’d be scared of the claws.

Hopefully her sense of humor will be back tomorrow. She’s not been fond of the funny since coming out of surgery. Not that I blame her… after all, she’s endured two major (and painful) chest surgeries and spinal surgery in the space of just 7 days.

But she’s just as feisty and scrappy as ever. She’ll be just fine.

Rest well TG. I’ll keep it quiet in here tonight.

It’s 4, and we’re still waiting to get back to see TG in recovery. I finally got impatient and called back to see if we can come back yet.

I talked to the same recovery Nurse L that we met with on Friday morning. She’s the one tending to TG.

First up, she apologized profusely, but that she could not let us come back yet — there’s an emergent situation with another patient (not TG *whew*), and they can’t let us back there at this time.

She did say TG was fast asleep and resting well. They’d given her a dose of valium and had her back on her PCA of dilaudid, and so she was comfortable and resting just fine.

We’re back to waiting for an ICU room. Worst case, we’re in for a longer evening in recovery again. If that scores us a fast pass back to a floor room as a temporary ICU room again… I’m okay with that.

So we wait.

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….

Yesterday was a pretty good day.  Girl Child was awake for decent stretches and able to visit with some friends and talk on the phone to others.  On the way back to the hospital, I’d picked up a gift from one friend who couldn’t make it to visit, and it included a blanket and stuffed puppy that spent most of the day and night in her bed with her.  GI issues were still a problem, but they’re just going to be a problem until after the final surgery when she can get off some of the meds she’s currently on.  DH went home to prepare some things for his parents staying a night or two with Boy Child just in case the snow storm cancels school.

At some point a nurse brought in the surgery consent form, and I noticed on there that for the first time, the current plan reads T4-L3 with L4 only if necessary, where everything previously was part of the original T4-L4 plan. I took that as a hopeful sign that Dr. C. felt it might be a realistic option.  He called later to check in on Girl Child, and I thanked him for the reworked consent.  I told him we knew he couldn’t promise anything, but we really appreciate that we can trust him to do what’s best for her.  He told me his approach is always to ask “What would I do if this were my daughter?”  I’m trying not to get my hopes up too much, but I do trust that if he can possibly save her L4 level, he will.

My cousin B. and Uncle D. brought DH back to the hospital in the evening, and we visited for quite awhile. B. and I got some dinner, and it was nice to get out of the room for a bit.  DH called down to me as I was finishing up and said that Boy Child is really missing me and I should call home and talk to him.  It dawned on me that he has only seen me twice since last Monday: briefly getting ready for the school bus Wednesday morning, and briefly at the hospital Thursday.  I called home and we talked. He was in tears, and it broke my heart.  I promised him if the weather held up, I’d be home Monday evening/night and that we could snuggle up together.  I also told him we’d be sure to call and let him know when Girl Child is out of surgery.  As an aside, when I asked him to tell me things he wanted to talk about, he said he wanted an X-Box, and there’s a part of me that would love to get him one; he’s going through a lot himself in the midst of all this.

The night was fairly uneventful.  DH took the first sleep shift on the couch in the room while I watched over Girl Child.  Our night nurse K. (not the same that we’d had before, but we’d met her working with the previous K.) was very sweet.  DH and I eventually switched out, and I curled up on the couch. I dreamed that Dr. C. was talking to his doppleganger in the OR about whether or not he could maybe stop at L2 or if he’d need to go to L3.  Pretty obvious what’s on my mind right now…

 

It’s been a busy couple days, busy, yet not incredibly remarkable.

The big challenge has been keeping TG ahead of the pain curve. She’s slept a lot, which has helped.

So here it is, 4 hours until the main event. DW is (hopefully) resting somewhat comfortably on the couch. TG just finished a movie that she really wanted to see; her final labs and meds have been taken, and they shouldn’t need to move her again until it’s almost showtime…to the point I’ll likely resist letting them move her, just to let her get her final rest in peace and quiet. The big snowstorm coming into the area is staying mostly liquid for the most part, although it looks like the thermal profiles are about to change over to snow.

Nothing to do but finish this last pre-surgery watch, and wait.

After the long night and morning following the second surgery, I knew I needed to get a break and some sleep. DH and I talked on the phone. He was still fighting his cold, but had gotten some sleep, and he rounded up my cousin S. to help get me some rest. I’d intended to curl up on the couch in the room once they arrived.

Soon after hanging up with DH, my sister M. and stepmom arrived, bringing with them a couple gifts that had arrived downstairs from our friends T. and S. in DC. One bag was full of goodies and snacks and the other a giant stuffed bear for Girl Child. I’m told she already informed DH he better keep his hands off “her” candy, but I’ll be showing her the message mentioning it was for all of us when I dive into some cookies at some point. Again, the outpouring of love and support from people literally across the country and world has been phenomenal.

My sister M. suggested DH and I both go home to rest and let one of the family stay with Girl Child for awhile. The hitch there is that in order for us to leave for any significant time and leave family there in our stead is that we have to sign a paper that says not just that they can stay but that they can make medical decisions. And that is NOT a piece of paper either of us is going to sign. Not that we wouldn’t be called if there was a question about something, because we would, no doubt about it. But there’s simply no way either of us would feel comfortable making a decision about her care from offsite when neither of us can see her (and her monitors) with our own eyes to know how she’s doing and what she might need.

But the family was right that I needed sleep, and that sleep would probably be found better in my own bed at home than on the hospital couch with everything thing going on around me. DH and S. arrived, and I grudgingly consented to bring driven home by S., but only after I was able to fully tell DH how things had been going, what was working/not working etc. Before I left Dr B. The Thoracic Surgeon stopped by, and I asked him if Girl Child looks like she should be expected to look at this point, and he said yes and that he has no concerns. That was a relief to us.

At that point, I exited stage left and went home to sleep, practically tucked in by S. I’m not sure she thought I’d actually go to bed if she didn’t watch me go there herself. Given my stubborn streak, that suspicion wouldn’t have been unfounded. But I did sleep. After a bit of a cry. This whole thing is just…hard, and my emotional armor feels a little dinged up at this point.

I woke up and showered about 4 hours later (man that shower felt great!) then checked in with DH, M., and S., who had returned to the hospital. Things sounded in control, so I considered spending the night at home rather than returning to the hospital. A friend of ours had offered to bring by some dinner, and I gladly accepted the offer. P. brought homemade beef stew and brownies, and it was so good. Little things like that meal have meant so much to us. After I ate, I checked in again at the hospital. I read a bit, then crawled into bed around 11, which if you know me, you know is very early for this night owl. That was probably the most restful 8 hours sleep I’ve had….

This is just too fitting.