Author: D H

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.

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.

This is just too fitting.

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.

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.

Finally, she’s sleeping well.

Ever been at the hospital for a couple nights, and wonder why they just would seem to come in just as you had drifted off to sleep? And it pissed you off to no end? Well…

Every time TG would fall asleep, her respirations per minute would start to drop to 9.. 8… and her blood oxygen level would drop below 90 and slowly start creeping downward to 88, 87,…. So we’d have to wake her up and make her take a couple deep breaths to make sure she was breathing enough to get oxygen in her blood. It was frustrating as hell too, though I’m not sure who was frustrated more. She was sooo tired and strung out. I hated waking her every time. Had to be done.

At this point, it was one of two things: either the 2am roll to the left side put her into a position where her SpO2 was staying nicely between 89 and 91 and RPMs right in the 10-12 range… or in hitting the pain button every 10 minutes, it was sedating her just a hair too much. Either way…. she’s finally asleep. And daddy can finally relax and breathe some.

DW should be here to relieve me in about 6 hours. Hopefully TG will sleep for more of them… at least until the 4am roll.

The first round of surgery is almost done. The work on her spine is done, and they’re closing her up now.

One of our biggest concerns is that the surgeon would need to remove discs from her spine down to L4, which increases the chance of back pain later in life. He just wasn’t sure what he would have to do until he got in there.

Well, he said her spine is very loose, very flexible, and it seems like it should straighten well. He stopped at L3 instead of L4, giving her spine a chance to do its thing. If it looks like its not straightening up well enough, he can do L4 next Monday — hopefully he wont.

In short, great news all around for the first round. This feels very promising that he’ll be able to straighten her spine out more than we’d hoped… Maybe he will get more than 3 inches growth for her 🙂

Well, it looks like we’ve got a rescheduled time and date for girl
child’s surgery. We’re on for a 1pm surgery tomorrow afternoon. The good
news is this creates a small window of time for her to have some solid
food — she was starving this morning, and this is at least a little
reprieve. So, we’ve got to be down to the hospital at 1130 tomorrow
morning, which means everything has effectively been pushed off 24 hours.

Here’s hoping.