Author: D H

Shamelessly stolen from DW’s social media page:

JC > DW
(Some number of hours ago)

How’s TG doing with her half days of school? I hope its not wearing her down to bad. Still thinking of her.

DW: She’s doing pretty well. Back hurts as the day wears on, obviously, but then she’s having to be more physically active than she’s used to being at this point. Her teachers have been great with arranging schedules and materials for her, keeping her as comfortable as possible, etc. Her friends have been excited she’s back and very protective of her. They form a buffer zone around her so no one can bump her in the halls. She’s tired when she gets home, but I know she’ll get stronger every day.

With recovery from anything, a setback or two is to be expected and is normal. It doesn’t make it any less annoying when they happen.

TG sneezed yesterday. Later in the day, she coughed.

Such simple things. She’s been coughing and productive, and it was all normal and healthy. The problem is, the sneeze was a doozy. (Or at least, so I heard.) So was the cough. Suddenly nerve endings which had calmed down were lit back on fire. Both of her sides have really been bothering her a lot for almost 24 hours now. Getting up is an adventure in pain… which is a double whammy, because she needs to get up and walk from time to time to keep her back muscles loose.

She had managed to go Friday and Saturday without any extra doses of pain meds, which was awesome. Sunday, she needed a couple extra, and today’s looking to be about the same.

So, time to take a breath, ease up on the schoolwork and clarinet, and just heal for a little bit.

TG really wanted to go attend her band concert tonight. I hope she feels a whole lot better in the next 12 hours and can make it, because it would be a big milestone for her. Here’s hoping for small miracles.

For the first time in 12 days, the family is all home together. Whew.

Now we get to go back to the way things were, right?

We’re on to the next phase of things… figuring out what “normal” is going to be, at least for a little while.

TG realized her preferred means of logrolling off the bed will be to roll to her left, since the rib on her right side bothers her more. So, we needed flip TG’s bed around so her feet are against the wall, and her head is at the foot of the bed. The alternative would be to rearrange her entire bedroom which, well, that’s just not going to happen quickly.

We’re also expecting she’s going to crash on the couch in the living room from time to time. We’re probably going to need to rearrange the room a bit to make things easier for her for a couple weeks.

We’re also sorting out when she needs to take her meds throughout the day to keep her pain under constant control. One med is every 6 hours, another is every 4 hours, and a third is every 4 hours, but with a max of 5 doses in a 24 hour period. Because the KISS principle is for sissies.

DS and TG were a little upset earlier this evening. They decided they wanted to play Minecraft together… right before DS needed to be heading to bed. TG may not have school tomorrow, but life is moving on as normal for DS. Neither of them liked that, but… oh well.

The cat was most confused when TG arrived home this afternoon. After two weeks of wondering where everybody was, she was somewhat aloof… possibly because her person smelled different. She warmed up quickly enough, and spent a good deal of time curled up on a pillow on TG’s bed. She came out for a good long cuddle with daddy, and she seems like she’s settling back in.

Tomorrow: time to pull the house back together, get a bunch of stuff moved around, do some shopping. I’ll be back in the office for the first time in a couple weeks. Boy child will get on the bus in the morning, and we’ll all start moving on with our lives.

But for tonight, we’re all home. DS is in bed, I’m watching Sunday Night Football on the couch, and DW and TG are in the other room hanging out. And even if things aren’t completely what they once were, it’s a good sight better than having the family split in between two places.

And I’m glad for that.

Short blog entry this morning. She’s eating nearly normal foods this morning. Last night, she enjoyed some bits of pumpkin bread provided by J and cousin B — we weren’t sure if she could have the chocolate yet, so we picked out the chocolate bits, but she nommed a bunch of bread.

This morning, Mickey D’s hotcakes, and another pancake from the hospital food service. Also, red grapes (not white!).

Her oxygen sensor was removed last night, and her EKG/breathing sensor was disconnected this morning.

DW had a good talk with the attending this morning, and we’ve gotten cleared to bring TG home. At this point, it’s just a matter of paperwork and formality. So, time to start packing up, and getting ready to bail. We’re hoping to roll out by lunch.

W00T!

TG and just wrapped up a walk around this side of the hospital floor. We bumped into Nurse K (no, not that one, the other one) and Nurse Y, both of whom were thrilled and excited to see her up and walking around. Nurse K said she would stop by a little later this evening to say hello and get caught up.

TG has made some good progress in the past couple days. She’s been cleared to start advancing her diet some at the nurse’s discretion, and they made the decision tonight to move her onto more of a BRAT diet. She’s munching on Honey Nut Cheerios now, and she said they never tasted so good. The nurses also disconnected the IV drip, so she needs to drink more fluids… hopefully that will also encourage things to get going.

We’re very quickly getting to the end of our stay at the hospital, and it couldn’t come soon enough for any of us. We were hoping today would be the last day, but she’s not quite there yet. Hopefully tomorrow morning we’ll get the green light to go home, and then the mad dash will be on. DW already took a bunch of things out of the room so we don’t have quite so much in the morning.

More good news: with TG getting up and moving around more, they don’t need to make her move position in the middle of the night. Looking at her med schedule, she might get a run of uninterrupted sleep from 11 to 3ish in the morning. It’ll be the longest she’s slept without disruption since a week ago Monday. Here’s hoping.

It’s all good stuff… I, for one, welcome a return to some semblance of normalcy 🙂

Last but not least, TG says she’s not quite up to dictating a post until after she gets home. So, it might be a couple more days before you get to hear from her.

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.

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.]

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.