Titanium Girl

In fairly short order, Dr. B The Thoracic Surgeon came out to say he was finished with his part, and it went well.  He figured Dr. C. would be along in about an hour, and showing himself to be as efficient as ever, Dr. C. was out just shy of the hour.  He only took discs T6-T10 because he couldn’t reach T4 or T5, but that isn’t problematic because 1) he got the most important discs in the apex of the curve and 2) he can still take T4 and T5 on Monday.  He said that he was very pleased at how the lumbar was looking, and that he’d actually remarked in surgery about how straight it was looking.  Some time later we got the call that Girl child was in recovery, had come out of the anesthesia just fine, and was currently sleeping.  We were waiting on an ICU bed at that point, so she let us come see her just as a friend of ours called to say he’d arrived with lunch for us.  We watched her long enough to be satisfied that our little Sleeping Beauty was doing ok enough for us to take a break, then we went downstairs and ate lunch with T. The break was very nice.

When we got back to the recovery room, Girl Child was just starting to wake up.  She looked good, but unfortunately she was in a lot of pain.  Pretty much everything hurt.  And given she’s been through 2 thoracotomies (opening of the chest, considered one of the most painful operative procedures and one of the more challenging ones to recover from), 2 rib removals, and 10 vertebral disc removals in the span of 4 days, it’s no wonder.  They gave her extra valium, and before drifting off to sleep, she mentioned her shoulder blade hurt.  I hoped that meant that the vertebra that had curved behind that shoulder blade had moved some.

From there began our holding pattern for an ICU bed.  She’d been in recovery as of 11:55, and before all was said and done, we didn’t get an official room until 7:30.  That time was filled with pain management issues and sleeping once the pain was controlled enough. At one point, she mentioned she didn’t have her stars to look at; she’d become really good about using that technique to focus her mind away from the pain.  Child Life brought some other things, but they just weren’t the same.  In the grand scheme of things, it was actually quieter in recovery without all the myriad alarms going off on everyone’s monitor for everyone else, so when her pain was controlled, Girl Child got better sleep than she had in ICU.  But pain control was an issue a lot of the time.  I can’t tell you how hard it is to watch your child suffer, especially knowing she’s not yet finished with things that are going to hurt her, and possibly hurt her more.  Nurses K. and P. were really sweet, apologizing for the delays in getting us a room and getting her slushies and anything else she needed .  She actually ate quite a lot of slushy, which was more than she’d eaten in several days.  Before heading to our room, we asked for another so she could take her colace with it.

When we did get moved to a room, it was actually to the same unit we’d been on this morning, just two doors down. Because of the high patient census, they’d turned a few regular rooms into ICU rooms, and our nurse the previous night had said she’d hoped we’d get one of those since it would mean we could stay in it after we moved from needing intensive care.  I sent DH home for another night to try to sleep off the remains of his cold.  Unfortunately, the next several hours were marked with more pain.  It was hard to find a comfortable position because of the new incision and pain from the rib removal, and we weren’t staying ahead of the pain curve.  Nurse J. and I talked about options, because Girl Child had already been bumped up to the max allowed dose per hour of dilaudid.  I resolved to set a timer for a longer interval than her pain pump allowed, because the pain pump would max out her hour dose within three presses timed 8 minutes apart.  But if I spaced her out to 20-30 minutes, she’d have more constant pain control.  She also added some tylenol on top of everything, and I actually had hope that it would work for her when 20 minutes later she woke up, smiled her usual smile and said, “Hi Mommy!”  She said her pain level was a 1, which she hadn’t reported at all while in the hospital, and I’m not sure the last time she reported it at home with her back pain, either.  Unfortunately it was a short lived reprieve as  after the next roll, she complained of pain where the rib used to be and where the drain tube is currently.  An attending doc from the surgical team suggested a lidocain pain patch near the area of the incision, and Nurse J. set out making that happen.  The pain coupled with the GI discomfort from all the meds messing with her GI tract, I figured we were in for a long night….

One of the things DW and I have tried to do is protect TG’s brother, DS, from the churn and chaos of everything that’s going on. As best as we can, we’d like him to have a normal life, and not be affected by what TG is up against… or at least, keep it to a minimum. While he has the right to know and be totally informed on what’s going on, he also has the right to continue living life as it has been, and not be disrupted any more than necessary. It’s worked out well… for the most part. The game plan of trading days and nights with DW got a little disrupted thanks to a cold, but for the most part, DS has continued going to school, doing homework, spending time with his mom and dad and grandparents as best we could, making meetings with scouts, etc.

In all of that, he hadn’t had the chance to see TG for a few days, since she went in for the first surgery. For as much as they can sometimes bicker and argue, they really do love each other a whole lot, and each was missing the other. He’d talked to her on the phone some; he knew her voice would be quiet and she wouldn’t want to talk much because of the breathing tube from her first procedure. TG had said before going into the hospital that she didnt want DS to worry. Having talked to her a couple times on the phone, he was worried about her, but for the most part, the harsh reality of her life right now hadn’t fully sunk in.

It did last night.

He’s been asking to visit her for a couple days now. With him still getting over a cold (and me coming down with one), we were holding off… TG has a lot of challenges ahead of her in the next 7 days, and there’s no room in the plan for her to fight off a cold. For that matter, if DW gets the cold too, that will significantly complicate tending to TG. But, all the same, yesterday morning, he was asking if he could visit her that night. We played it by ear after he got home from school. We got his homework knocked out, and each got a good bath. We were both feeling mostly okay, but called down to DW to get a feel from her on things. We all agreed that masks and gloves were good precautions, but to go ahead and get the kids together.

Given the timing of things, we decided to see TG before dinner. We were able to spend a little time together, and another friend of TG’s and her friend’s mom came down for a visit. Unfortunately that meant TG was occupied with her friend, DW and the friend’s mom were talking. It was already an awkward situation – DS is only 9 after all, and had no idea what to say, how to act, or what he should or shouldn’t do. He just wanted time with his sister. Add to that everyone else seemed occupied with things, and he got bored and feeling out of place really fast.

I’d asked him in the car to tell me when he got bored, so that we could head on out… I had a feeling he would kinda quick, and I wanted to be able to get him outta there fast, for everyone’s sake. To his credit, he did– he was able to take just a couple minutes of boredom before asking ‘Dad, I’m bored, can we go?’ By that point, I’d seen it warming up, and was moving to pack up some stuff as DW and I had talked about, so there wasn’t as much to move around this morning. Unfortunately he got _really_ bored faster than I could get things pulled together, and so he started doing the usual 9 year old things to be disruptive and get attention.

We finished getting everything packed quickly, and headed out. As we got to the elevator, he said quietly ‘I really miss TG, Dad’. At that point, I was still a little frustrated with him; while he had been trying his best to contain himself, he is, after all, only 9, and a energetic boy to boot. My first thought was ‘well, she was there, you were there, couldn’t you just be more patient?’ I instead bit my tongue, trying not to be too harsh. We talked a bit in the car about him needing to work on patience (pot, meet kettle) and drove off to dinner.

He had asked to go to one of his favorite restaurants, one we don’t get to often. As we walked into the restaurant, I could see he was still really struggling. As we got settled at the table, I asked what was on his mind.

“What if she dies, dad?” His eyes start tearing up.

I almost lost it.

How the hell do you answer that?

How do you tell a 9 year old that it would crush your soul?

Obviously he gets it, or he wouldn’t have asked the question. Lying about the risk doesn’t make the risk less real or go away. And the one thing that has us all scared spitless, he nailed right on the head.

“DS, we can’t live life in fear of things we can’t control. She’s got one of the best doctors in the world. He’s never lost a patient, and he’s a very smart man. She’s in the best hands she can be.”

“If she died, I wouldn’t have anyone to play Minecraft with.”

Ouch. A second shot right to the feels.

“That’s not what you’re worried about most, is it?” I asked, understanding what he really meant.

He just quietly shook his head. “Dad, when can I see her again?”

We talked about his schedule of things coming up for the next couple days, and the soonest we would be able to get them together would be Sunday night. Or, we could just go back and try for them to have another visit.

“If we go back tonight, what will you do?”

“Just talk to her” he says, with that unsteady sound in his voice that he’s not even sure what he’d say. For that matter, while I desperately want to spend more time with her, “I love you” “I’m so proud of you” and “You’re doing great” only so far. And he’s in exactly that same spot.

“When she’s done with surgery tomorrow, do you want us to get word to you that she’s okay?” He nods quietly.

Fast forward through dinner, and we get back to the hospital. This time, it’s only DW, TG, and the two of us. We spend a little time together, and then it’s time for the usual ‘roll TG every two hours’ thing. And as sometimes happens, moving her results in a LOT of pain…. something he’s not had to see her (or anyone else) go through before… and he’s clearly very uncomfortable with what he’s seeing.

We talked more on the way home, and he loves his sister very much… and he’s scared for her. It’s one thing to be 40-something, and feel ill-equipped to handle what’s happening. It’s another to be 9, and to watch your sister be in agony.

I can only hope today brings him peace and some measure of happiness. He’s got a long road ahead too.

Girl Child slept ok last night, though only for 45 minutes or so straight with the 4am valium.  She was having some pain closer to surgery time that I suspect might be due to not being able to take the oral muscle relaxer after midnight.  Nurse K. came in to do her thing at various times, and at one point, Girl Child told her she was her favorite.  Even when she’s had to do things that don’t feel comfortable, she’s been obviously caring about her and joked around with her (and with me) a lot.

Around 4:45am Dr. B. The Resident, son of Dr. B. The Thoracic Surgeon came in to check on her.  He’s followed her the last several days, and he’s been very kind.  I talked to him about whether or not the incision drain tube from Tuesday’s surgery would come out today (he thought that was the plan), and about her general respiratory stuff (using the spirometer, respirations per minute, oxygen levels, etc).

Around 6:15, DH arrived as they were starting to prep Girl Child to head to the surgical floor.  An anesthesia nurse came in to go over consents, and on the paperwork I flagged that they had Dr. C.  doing the anterior thoracic release from T2-T10.  The overall plan all along has been to fuse from T4-L4 or L3 if he can work some spine magic, so this was the first we’d seen anything about T2.  The nurse looked through the records and could see the final pre-surgery plan of T4-L4, but the consent for whatever reason said T2-T10 for today’s procedure.  We decided to hold off on the consents until we could discuss with Dr. C.

Next up was a chest x-ray that Nurse K. wondered if they were supposed to get earlier than this last minute affair. Having heard of our experience with the fluoroscopy test yesterday, apparently Nurse K. said to the x-ray tech who showed up this morning, “PLEASE tell me that’s portable and she won’t have to transfer!”  Thankfully it was.  Unfortunately, it still required rolling Girl Child to put the x-ray plate under her, and that did hurt, but it was still infinitely better than the trip to the bowels of x-ray hell yesterday.

The last of Girl Child’s tubes and wires and lines (oh my!) were unplugged and moved to her bed in preparation for transport.  Her pain pump was turned off about 30 seconds before the surgical floor called to tell them to leave the pain pump attached.  Too late, and it had been nearly empty as it was.  Girl Child was going to be needing another dose soon, and we were going to be dealing with another transport, so I let the nurses handling that know that yesterday’s transport did NOT go well and to please be careful with bumps.  Thankfully, these ladies handled things much better and we were soon in pre-op.

We spoke first with the anesthesiologist, a different Dr. S. from Tuesday’s surgery.  She had a very laid back yet take charge manner.  We talked about what would be different going into surgery already with narcotics and other meds on board, and whether we’re already seeing habituation on her meds (we are, at least on the valium, in the sense that she’s not as sleepy on it as she initially was).  We mentioned she didn’t get her pain pump with her and she’s hurting from being moved for the x-ray, and she said, “Well, I’m planning on giving her a handsome dose of dilaudid in here before she even goes back so she’s out of pain.”  I don’t know why the phrase “handsome dose” struck me as perfect and funny, but it amused me.  Apparently Dr. S. was an adult anesthesiologist for years before deciding she wanted to go back for a fellowship in pediatrics because she loves kids. It was pretty clear in the time we spoke with her that she knew her stuff and loves what she does.  Girl Child mentioned her belly is uncomfortable, and she did get 2 doses of colace in yesterday, but there’s just not much else to do for it heading into surgery other than the pain meds taking care of it.  While waiting on her “handsome dose of dilaudid”, she experienced one of the “I feel like I’m standing up” sensations, and we brought that up to Dr. S.  She wasn’t concerned and said we should expect odd things like that with the meds she’s on.

We got a chance to check in with Dr. C., and I mentioned how badly the transport and fluoroscopy test went. It was hard to tell him without getting upset  and teary again, but I kept it together. He didn’t like hearing that and apologized, but the good news was her test showed her diaphragm is working just fine.  The even better news is that she won’t have to go down to fluoroscopy hell again after this surgery.  We also clarified the T2 vs T4 thing and confirmed it was a typo.  The proper level was noted on the consents, and DH signed them.

Spinal Cord Monitoring Nurse E. stopped by; we were glad she was back on the case.  She spoke to Girl Child again and reminded her that she’d be smiling at her from behind her mask just like she was last surgery.  It again brought a smile to Girl Child’s face.

As Girl Child received her “handsome dose of dilaudid”, the recovery nurse, Nurse L. told us that she’ll probably turn the corner with this surgery and that Monday’s posterior surgery should be a breeze.  Hearing that things might start getting better after today surprised us, given she’s going to have yet another rib removed, and I’m not sure either of us believe it yet, but we’ll see.  Dr. S. set about listening to Girl Child’s heart, and she asked how much of the dilaudid dose she’d gotten.  Apparently she’d only gotten the first bit and was already out of pain and fairly sedated with it. That worried me cause I thought that meant she was overly sedated on the first bit, but Dr. S. was really pleased because it meant she didn’t need  such a “handsome dose” after all.  We gave her some hugs as they gave her some versed and she got pleasantly loopy.  They wheeled her away from us.  Again.

I’d thought I’d do better with this one. I handled the first ok, I knew what to expect, and I know she’s in good hands. But this was harder.  Thankfully she was pretty much sleeping as I was breaking down.  DH went to hug me, which really opened the flood gates for both of us.  Nurse L. was very kind and talked to us a good long while about what to expect today.  I told her I was a little concerned that they waited a long time before we got to see her Tuesday, to the point where she had to ask when she could see her mommy.  When we were ready, she showed us to the waiting room to camp out.

Girl Child was looking forward to a visit from a friend late this afternoon/early evening, as well as a visit from DH and Boy Child.  She woke up at one point to very specifically ask that I wake her up if her friend R. got there while she was still asleep.  DH is still fighting his cold, so out of an abundance of caution, he and Boy Child donned masks and gloves for their visit; a cold is the last thing Girl Child needs on her plate right now.  DH brought me some clothes from home, so bonus.  R. brought Girl Child a warm fuzzy blanket, and we all chatted for awhile.  Girl Child was actually quite alert for the visit, and I think she’s not as sleepy on the valium as she was the first day; it still works for her, just doesn’t make her sleep for as long as it did. R. and her mom left, then Girl Child called and talked to some more friends on the phone briefly.

Shift change happened somewhere in there, and the same nurse we had last night, Nurse K., was back for us tonight; we liked her a lot, so that was nice.  DH and Boy Child left to get dinner, but while at dinner, DH decided to come back afterward because Boy Child was clearly missing his sister a lot.  The guys brought me tiramisu from the restaurant they had dinner at, which was really nice.  Then Girl Child needed to be turned to her side, and it didn’t go so well.  She took the muscle relaxer and was going to save the valium for the next roll 2 hours later, but she ended up in tears when her back spasms just weren’t calming down, even with her finding a star/firefly and trying to breathe and relax, so she went ahead and took it then.  Boy Child told me he was scared; this is the first he’s seen her since her surgery, and the reality of what she’s going through is a lot to take in for a 9 year old.

We learned that Girl Child’s surgery tomorrow has been moved up to 7:30am (it was originally 9am), and Boy Child gets on the bus around that time.  We arranged for my Cousin S. to come to the house to get Boy Child on the bus in the morning so DH can get back here before Girl Child heads back to the OR.  DH and Boy Child left for the night, and I settled in with her.  She was sleeping well when I got a call from the desk nurse saying some friends of DH and mine were there. I met B. and D. up front since Girl Child was sleeping, and we chatted for several minutes.  The break was nice, and they passed along a McDonald’s card for when Girl Child is ready to eat “real” food sometime after Monday’s surgery.  When I mentioned later that they had stopped by and gave her the gift card, it brought a smile to her face.

Over the course of the night I (and Nurse K.) have seen more of Girl Child’s personality come through the haze of meds, and she’s been awake longer stretches.  She dictated an email to friends, worked on her incentive spirometer (getting just above 750ml, which is an improvement), managed to swallow another colace pill in jello, and watched some tv.  Nurse K. told us that the hospital’s census is climbing again, and they’re preparing a few rooms on our current unit to be used as ICU rooms.  She was kind of hoping that we might end up in one of those since we wouldn’t have to be transferred out after Girl Child no longer needs ICU care, and it would have all the amenities of the regular rooms.  Fingers crossed, there.  At one point, we both fell asleep, and I woke up to a stuffed animal tossed at my face when she wanted to be sure to get some fluids in before midnight when she’d have to stop everything for surgery.  Apparently she’d said my name a couple times, but I hadn’t responded.  Nurse K. told us she could have a coke if she wanted it, so she took her up on the offer and drank a decent amount.  Her tummy still feels tight, though.  She’ll get a last dose of valium around 4am when she’ll need to be turned again, then they’ll probably start prepping her to go to the surgery floor around 6:45.  I’m glad our surgeon was able to move up the time; the earlier in the earlier out in what’s going to be another long day.

 

Much of the day was uneventful. Dr. C. made his rounds and clarified his statement after the surgery about how straight she is in the lumbar now.  He said he was referring to L3, that it is looking fairly straight now.  He’ll still have to see how she looks Monday when he’ll make the final decision on where to stop the fusions, but he promised to do the best he could with it.  He also mentioned doing a test to make sure her diaphragm is working ok since it was partially detached and re-attached during the last surgery.  Girl Child drank here and there, used the incentive spirometer, though she hasn’t really improved on her previous record of about 700ml.  She had a time or two where her pain level was up, but she coudln’t get more medicine yet or it wasn’t yet kicked in, but she looked up for a firefly/star and focused on it to distract her.  At some point one of the doctors in charge of ICU came in with another doctor and talked to us about possibly enrolling her in an FDA study of something that’s made and used in the US post-operatively, but that some hospitals want to source from Europe.  The FDA requires them to study it on at least 60 kids to establish safety because it’s from outside the U.S., even though it’s the same thing.  Girl Child pretty much said she didn’t want to do that, and if she’s that adamant, I doubt we’d make her, but DH and I will discuss.

Her tummy was starting to feel uncomfortable, and they again brought up the colace.  I told them how the flavor of the liquid was awful and made her wretch before, and we talked about the possibility of getting a pill in her instead.  She’s only ever previously taken pills if she could put them in a spoonful of applesauce, which she currently can’t have.  But we hoped we could get it in her in a spoonful of jello or slushy.  The nurse tried to find some slushy, but wasn’t able to (the machine is apparently broken or something), but we had success putting it in a spoonful of orange jello.  Huzzah!  She said her belly was starting to feel a little better, then drifted off  thanks to a dose of valium.  We had another visit from our friend T. who brought me a sandwich to eat for lunch.  Friends T.J. and S.V. sent her some flowers, and she got a big smile when I  read her the card and told her who they were from. After T. left and I’d eaten some of my sandwich, the uneventful day ended.

Nurse C. said it was time for her to go down for her fluoroscopy, the diaphragm functioning test.  I asked if I could go with her, and they said yes, and I asked Girl Child if she wanted me to, and she said yes.  Some other nurse came in to direct her transport down to xray.  Myriad wires and tubes had to be undone, detached, and moved various places to get ready for transport.  I asked if she would have to be transferred from her bed for the test, but they didn’t know.  I really hoped not given that simply rolling her from one side to the other hurts.

When she was born, she had swallowed some fluid and mucus that caused her to spit up a lot, and they told us they needed to take her to the nursery to lavage her.  That process involves running a tube up her nose and down into her stomach so they could flush out her stomach with water or some other kind of liquid.  It would be uncomfortable, but necessary to help her out.  Having just spent 43 hours in labor with her, I was exhausted and didn’t think I could emotionally handle watching my newborn screaming and getting tubes shoved up her nose, so I sent DH to be with her.  Today was the day I made up for that.  The day my stiff upper lip failed me.

The nurse in charge of the transport hit every bump on the way, and at times it didn’t seem like she was trying to be very careful.  When you’re missing most of a rib, have a 6-8 inch incision in your belly, and your back muscles are angry at being cut 2 days ago, those bumps are painful.  She cried out every time.  When we got to the radiology lab, there was some confusion as to why Girl Child’s nurse didn’t come with her, and why only the student nurse and the transport nurse came from our floor.  Sizing up the shape of things with Girl Child saying she was hurting and didn’t want to move along with the very unfortunate reality that she would have to be moved since the machine was too narrow to go over her bed, the radiology techs started gathering up more people to help.

For a moment it seemed a little Keystone Cop-ish, and I was not liking where this was going as they were trying to figure out the best way to get her from the bed to the table.  One of them asked me how I was doing, and at that point I was listening to Girl Child crying as they’re trying to adjust things around her and now they want me to think about how I’m doing.  Avoiding thinking about how I’m doing is how I’m doing ok at all.  How I was really doing at that moment was really freaking sh**ty because my little girl was hurting a lot, and yet she needed this test to be done before surgery tomorrow, and there was apparently no way to move her that didn’t hurt.  Having  to watch your child in so much pain knowing you can’t make it better and you have to go along with it for her own good is panic inducing.  The tech could see how upset I was and gave me a hug as my resolve failed me and the tears flowed .  A radiologist came in and started directing things.  Initially she suggested maybe waving off the test for today since Girl Child was clearly in so much pain.  I mentioned the next procedure tomorrow is the anterior thoracic release, and the radiologist realized delay wasn’t possible.

They wanted to roll her to her left to put a board under her, but that’s where her incision and tube is, and Girl Child spoke up for herself saying she didn’t want to go that way.  The radiologist very kindly said that was fine, she could be rolled the other way, no problem.  After a very painful roll and board shoved under her, she was painfully slid onto the table where the fluoroscope machine was brought over her, bumping her table in the process.  Somehow she managed to calm down and breathe normally for the test, and the radiologist said she got good pictures.  Thank goodness, given the whole process sent her into a pain level of 10, which she has NEVER reported before.  Another painful slide and roll ensued back to her bed.  A woman who had been on the table sliding her over told Girl Child she is a beautiful young lady, at which point I wondered why, exactly, that was supposed to be comforting.  Then she said, “Ya know, I wouldn’t get up on this table for just anyone, would I, mom?” Through my tears, I just muttered, “Uh, sure?”.    Girl Child asked to see her fluoroscope pictures, and the radiologist adjusted thing so she could look at them.  Then we proceeded to the bumpy journey back to the 4th floor during which I let out a, “Hey, can we watch the bumps?!”  Once Girl Child was finally settled back into her room, she reported her pain was back down to a 5.  They rolled her to her side for her normal every-2-hour roll.  The trip and pain had exhausted her, and thankfully she slept peacefully for a long time.

When you have a baby, they tell you to sleep when the baby sleeps.  And when that baby–who is now 12 years old and doesn’t remotely want you to refer to her as a baby anymore– is in the hospital for major spine surgery, you sleep when she sleeps.  Especially after they give her valium, you’ve been awake for 18 or 20 hours, and you know she shouldn’t have muscle spasms or breakthrough pain for a couple hours at least.

There’s actually blessedly little to write about the night on the regular unit.  We put some movies on, not that she actually watched much of any of them.  She slept fairly decent stretches, and I dozed when I could, though it’s hard to trust that all the numbers and graphs on the monitors will remain good if I shut my eyes or turn away from them.  She had to be turned every two hours, which she hates, but it has to be done.  At one point, she was uncomfortable, so she chose a firefly/star on the ceiling and followed it to keep herself focused away from the pain. She’s begun drinking more Gatorade, though she hasn’t eaten anything.  At 4am she could have had another dose of valium, but she chose to save it for the next turn at 6am.  Her temperature is a slightly elevated 99.1 to 99.2, but it isn’t at a concerning level.  She’s been working on the incentive spirometer, which is a gadget that gives her feedback on how deep a breath she takes in and also helps stave off fluid in the lungs.  She’s not taking incredibly deep breaths at this point, because it hurts to breathe, but doing this several times a day will help.  She wanted to dictate a blog entry to me, but she got tired, so it will wait. Rounds started at 4:30.  Next day is here.

Girl Child had a few visitors while we were waiting for the transfer to the regular room.  She wasn’t terribly awake for either the visit from our friend T. or from her paternal grandparents, but she enjoyed seeing them all.  Thankfully we didn’t wait too long for the regular room, and Nurse S. and another nurse were soon getting Girl Child’s cords and oxygen packed up for transfer.  We didn’t have to go very far, just down the hall, really, on the west side of the floor.  Once there, a new nurse gave us the tour of the room and unit, checked Girl Child’s orders and vitals, and left us to settle in. Not long after we got there, my stepmom came to visit.  Girl Child slept through quite a lot of it, but again was happy to see a familiar face.

It’s amazing how much quieter the regular room is.  In ICU, the vitals monitor beeps for every heartbeat, and the tone of the beep changes depending on the oxygen level of the blood with higher pitches indicating higher oxygen levels. What’s more, alarms sound on your monitor for other patients so nurses see them no matter where they are, so it’s a constant flood of beeping and alarm bells.

The regular room is almost silent, save for the bubbling of the machine that drains her incision, and it’s actually sort of soothing.  And because the nurses don’t have to come in as often, Girl Child has actually been able to get some decent stretches of sleep, for which we’re both very glad. She did have another hiccup with muscle spasms, and rolling her every two hours doesn’t feel good, but the nurse has been very prompt with meds for her when she needed something beyond the pain pump.    She also brought in a lamp that projects a galaxy with moving green laser stars or fireflies on the ceiling, which has been kind of mesmerizing.

Girl Child’s school nurse just happened to be visiting someone else and poked her head in to see how she was doing.  Then late in the afternoon, her math and science teacher came bringing handmade cards and gifts her classmates sent her.  I can’t tell you how phenomenal everyone at her school has been; it’s been a tremendous weight off our shoulders to know how much thought and effort they’re putting into making sure she gets what she needs academically in the time she’ll be out of school and when she returns.  And that’s not even mentioning just the basic kindness and concern they’ve shown.

Originally DH was to relieve me this evening and bring Boy Child to visit his sister.  We already knew Boy Child was at the tail end of a cold, so he would not likely be allowed to visit.  Unfortunately, DH woke up from his sleep shift with the same cold.  We decided it would be best if I stayed on to avoid him bringing the germs with him; a cold is pretty much the last thing Girl Child needs right now.  This evening brought a visit from my sister M. and cousin S., and I even went on a very short walk with M. between pain pump times.  Girl Child talked on the phone with one of her friends as well as her brother, and is currently sleeping courtesy of a dose of valium.  I should probably sleep myself since I know she’ll be good for awhile.

I stayed at the hospital last night until around 10:30.  They needed to roll Girl Child to her side around 10, and I knew that would be painful, so I wanted to see how it went.  She did ok with it, and she was actually starting to perk up some as the anasthesia wore off.  I felt like she was doing ok enough for me to leave, so against every mothering instinct in my body, I left, leaving DH at the hospital for the night.  I made it home and filled in the in-laws with how she as doing, showed them pictures, then headed to bed after they left.  After my brain got quiet around 1am, I actually dropped off for decent sleep, though I was wide awake at 5am, an hour or so earlier than I needed to be awake.  Boy Child woke up on his own and we hugged and talked about how his sister is doing.  As much as they bicker together, they love each other a lot, and he clearly misses her.  He was teary when I told him he may not be able to visit her since he’s got the tail end of a cold.  I got him on the bus, picked up some subway for me to eat later, then got a call from DH saying Girl Child was cleared to have a bit of Gatorade if I could pick some up on the way.

Gatorade in hand, I went to the hospital to relieve DH for the day.  He was dragging and irritated that the day nurse seemed less quick to respond to issues than the night nurse had been.  Girl Child looked good, though she was uncomfortable in the side position they had her in.  Flat on her back is the most comfortable position for her right now, but they have to roll her every 2 hours.  After DH left, Girl Child and I talked some, and she watched a  bit of tv.  Her pain level was increasing, and the leg pumping sleeves that prevent clots were uncomfortably tight, hurting her more than her back, which is saying something.  I paged the nurse, but she was clearly busy with something going on in another room, so I asked the nurses at the desk if the leg sleeves could be adjusted.  One of those nurses was the nurse practitioner assigned to Girl Child, so she came in to help.  She removed the leg sleeves, though they’d have to be put back on after an hour.  The reprieve helped her, though.

The bigger problem was that her general pain control was no longer cutting it.  There wasn’t breakthrough pain because it was all just pain, and she was in tears. Nurse Practitioner S. immediately asked if Girl Child was on anything for muscle spasms. I told her I didn’t think so, and she she was pretty certain that was causing the pain, given what Girl Child had done.  She went out to the nurses station to check on things, and Girl Child’s nurse soon came in with a big vial of  valium.  Unfortunately, valium burns going into the IV, but the relief was worth it.  Nurse S. rolled her to her back once the valium was on board, and Girl Child fell asleep almost immediately.  Lots of checks of various tubes and cords ensued, and a visit from Child Life that Girl Child woke for. She reported her pain level had come down from a 7 to a 5.  Better.  And she fell back to sleep again, so bonus.  NP S. came back in to check on her. She ordered a muscle relaxer for every 8 hours, and she can have the valium in between if she needs it.

Nurse S. brought the muscle relaxer a short while later along with some colace since the narcotics are slowing down her digestive system.  Both were liquids since Girl Child doesn’t yet know how to swallow pills without the help of hiding it in applesauce, which she can’t currently have.  She tried a bite of jello before the meds, but wasn’t very interested in it.  She took the muscle relaxer fine, but one taste of the colace and she declared, “It tastes like barf!”  She was only able to choke down a third of the syringe, then soon said her stomach felt off.  I tried to spoon Gatorade into her mouth and I brushed her teeth, but it didn’t take care of the taste.  I’m pretty sure having to wretch into an emesis basin while laying flat on your back, sporting a 6 inch abdominal incision, a missing rib, and angry back muscles isn’t on Maria Von Trapp’s list of favorite things 😛  Nurse S. quickly got some Zofran into her for the nausea and declared she wouldn’t need to worry about it for awhile, maybe until tonight.  Next up was removal of the arterial line in Girl Child’s wrist that had monitored her blood pressure for surgery.  Apparently she couldn’t go to a regular room with that, so it wouldn’t be staying in between surgeries.  Nurse S. removed it and declared her ready to move as soon as the regular room was ready for her.

TG is back asleep. One of the medical team was trying to help TG out while she slept and get her an oxygen mask, so we didn’t have to choose between controlling her pain and letting her sleep.

Setting the mask down next to TG was enough to wake her… and freak her right out. She had been sleeping so well, too. The problem is I’d stopped triggering her pain meds, so she woke up very uncomfortable…. on top of being completely freaked out. She asked to be laid down flat, so we did another roll early.

So yeah, that oxygen mask thingie didn’t end well.

TG had the presence of mind to remember wearing a breathing tube in the recovery room, and asked for one of those instead. I asked the main nurse to note the fearful reaction to the mask, and requested a breathing tube instead. TG dropped off to sleep, and her oxygen level started tanking again. Ugh.

The nurse saw it on her monitors as well, and put in the order for the breathing tube ASAP. TG’s wearing it now, and with the setting on low, her oxygen level is 99% with her asleep, and plenty of pain meds flowing. So good news there.

I talked with the intern/assistant to the thoracic surgeon this morning during her morning rounds, and we did cover the situation with the pain meds. Short version of that story: the pain meds may also be slowing her digestive tract down. That’s annoying, because TG really really really wants some gatorade. The medical team is talking it over now to make sure everyone’s in agreement as to whether TG is ready to move beyond ice chips yet, and it would be a slam dunk if her digestive tract would cooperate.

At least she’s sleeping again, her vitals are in really good shape, and she already had another move at 430, so hopefully she can stay out for another hour+ again.

It sounds like they’re about to do shift change. I might need to barracade the doorway to make sure people let her sleep.

She’s been sleeping peacefully for the last 30-45 minutes, so it’s time to finally get a recap out the door.

Before I get too far along…. thank you everyone for your tireless compassion, prayers, and unending support. The outpouring from everyone has been phenomenal, and I can’t begin to say thank you enough to enough people.

I do need to say a special thank you to BW and MW (you know who you are!). The dark chocolate milano cookies were EXACTLY the lift I needed most tonight 🙂

We got to the hospital right at 1130, right at our appointed time. After we got checked in and waited a few minutes, we were ushered into the main surgery prep area. TG met with the anesthesiologist first, then several nurses, and of course our main surgeon. I thanked our surgeon for the call on Sunday night, and he shared more of the background on how Sunday night went down. It seems he carried his appeal all the way up to the head person at the hospital, who also had to say “I’m sorry, there simply is nothing we can do”… which speaks volumes about how overrun the hospital was Sunday night into Monday. It’s probably for the best we took a 24 hour delay getting started. Anyway, he also had a conversation with one of the department heads in the ICU, who was just coming back off vacation. They listened, understood, and said “I will fix this for you tomorrow.” And to their credit, they did. Bad situation all around, and I gotta give kudos where they’re due to the people who were able to get engaged and get everything moving.

But I digress…

TG got taken back to OR a little before 130. We were expecting hourly update calls, and so for the first hour or so, we didn’t worry too much. There’s only so much progress they could possibly make in the first hour, all while getting TG wired up, all the monitors in place, all the safeties in place, the team lined up, and ready to walk down the script. The first update call came in about 315 — they had only really gotten started at 240 or so. As expected, there wasn’t a lot to update us on. So I figured there were a few minutes, so I went downstairs to grab a quick bite and a tea for DW.

I get back upstairs 30 minutes later at 345. To my surprise, there’s the surgeon, sitting on the couch, talking with DW. His part: done. The thoracic surgeon was in progress buttoning TG up. He said her spine was very loose, and therefore very flexible, with plenty of room to straighten. All wonderful news.

Based on what he was seeing, he decided to call the play on the spot to NOT go down all the way to L4, instead opting to only go from T11 to L3. This is great news, because it means she has a lot less risk of back pain later in life. So great news all around.

TG’s awake…. part two will have to come later.