Update on Carolyn

[Beckymk]

Carolyn had her surgery on Monday.

We just got home today. She's doing OK but not super great at the moment.

She has a few minor issues that need to get resolved but I think once they get taken care of, hopefully things will go faster for recovery.

The surgery went well but it was L-O-N-G -- she went into the OR around 7:20 - 7:30ish, they didn't actually start the first incision until 9:15 and then the surgery didn't get over with until 5:15 -- so basically an 8 hour surgery but I didn't get to see her until around 7:15 that night.

She spent 2 days in PICU and we had the option of staying one more night or coming home today. The pain meds she originally started with kept making her dizzy, she's not eating much & she has one lung that isn't quite fully back to normal yet.

This is discombobulated I'm sure because I'm going to go to bed right now until Carolyn calls for me to move her position or go to the bathroom or something I'm sure.

She basically did NOT want me to leave the hospital room the entire time, even just to go get some tea or something to eat, she would tell me to hurry back & then tell me "took you long enough" when I got back. Let's just say she's a wee bit cranky right at the moment.

Tonight is our first night home so it's going to be a MAJOR challenge! Right now Carolyn seems to prefer the couch to sleep on, so that is where she is going to sleep. Since I don't have a baby monitor, the only thing we came up with is our cell phones, she can call me if she needs me so I can at least sleep on my own bed, just in case I don't here her (as she usually just whines vs. calling my name!).

[LynnMarie74]

Hang in there....it'll get better, I promise!! She is young and will spring back into teenage-izm soon! Im surprised at her choice of the couch...hmm...good for her tho. I thought a hospital style bed would be a good idea....lets just say I got used to it, not sure how, and its finally now going back to the company that we rented it from....8 weeks later!! Take care of Carolyn and yourself....you will need your strength as her new servant!

Take care & get some rest!

Lynn

[scoliboymom]

Glad to hear Carolyn and your family are on the other side. You will find each day will get a little easier for you all. I remember well the crankiness of Patrick and he let it all out on me. I couldn't do anything right for him. It's a sign that they love you because they know you won't abandon them and they need someone to let it out at. I think mom's are easy targets and rest assured it doesn't last. Get rest yourself whenever you can. I actually set an alarm clock for every two hours to give meds and turn Patrick until he was able to manage it himself.
Take care, won't be long before she's back to herself!
Ramona

[Beckymk]

You will find each day will get a little easier for you all. I remember well the crankiness of Patrick and he let it all out on me. I couldn't do anything right for him.

That pretty much sums it up! It has been brutal! Today is actually a little better. I actually saw a SMILE with a semi-nice comment. It was a brief one but at least it wasn't a SNARL like I've put up with so far.

I think once she's allowed to shower, she might feel more human again. We have until Thursday.

I know she was just saying she wants to feel normal again.

[Pooka1]

I think your daughter's mood will pick up quickly being home.

Amazing how she wanted to sleep on the couch. My daughter needed a regular bed with intricately placed pillows when she first came home. It doesn't seem like she ever could have been comfortable on the couch.

Best wishes for a fast recovery.

sharon

[momw/scoli]

Hi Becky,
Thanks for the update! I have been thinking about both of you. My daughter is also 14 and we made the big decision this week to have surgery. I am learning so much by reading everyone's posts. She will have surgery May 28. She will be fused T2 to T11 or 12. She actually has 3 curves. She looks very even until she bends over. Her lumbar curve bended out to a 10 degree curve on the bending films, so they are going to leave it alone.
I hope Carolyn is back to her old self soon. Please keep us posted and try to rest when she rests. How are your other children?
Becky
Mom to Emily 14 (Now a 51L and a 43T)

[alwayzsomethin']

Hi Becky, you and Carolyn have been in my thoughts. I know how crazy it is at the hospital, being there 24/7. I did the same and got the same comments, "what took you so long?" I'm glad to hear your home already! And yes, it will get easier day by day. Then comes the tough part of trying to hold them back and telling them to "take it easy" or "slow down". My daughter slept on the couch, too, for a couple days. We got one of those foam pads (looks like the egg crate) from the hospital, and that worked well. The first shower will definately lift up her spirits. Kaitlyns first shower was in the hospital. You could hear her 20 ft away saying,"oh yes, this feels soooo good, ooohhh, I love this day!" It was pretty humorous. It reminded me of the Herbal Essence? shampoo commercial where the woman is in the shower going, yes,yes,oohh!!

Keep in touch, and like said before, take it one day at a time, it will get better! Tracy

[alwayzsomethin']

P.S. I forgot to ask you how it went with visitors? You guys weren't in that long so hopefully you weren't bombarded. Tracy

[Beckymk]

There are lots of little things and it all depends on hospital, etc...

One thing we just *really* lucked out on is hair ties. Carolyn brought 2 with her and neither one had metal, so we could use them. We were able to put her hair in pigtails. Considering, it is STILL in those same pigtails, that's a good thing or we would have one big old mess on our hands come Thursday.

They would have washed her hair but it is really thick & so it was basically decided to leave well enough alone & just leave them in the pigtails.

We hadn't even *thought* about it, she just happened to put a couple on her wrist out of habit.

She took a shower on Sunday before we left but that was really stupid because she had to take ANOTHER one when we got to the hospital and use their soap & shampoo that had no fragrances or anything in it.

I'm sure I read a lot of this stuff beforehand but apparently it didn't really register as I was reading it or I totally blanked out on it.

The one thing I DID know about because I read it was that I was going to have to help her in the restroom afterwards. I'm still doing that, so I really can't leave her at the moment. She certainly isn't going to have her father help her!

One weird thing is she now sleeps with her glasses on too. She doesn't want to be without them, so she just sleeps in them. I think it was partly due to I had them with me when she was in PICU and I stayed in a parent room vs. her room those nights. She was NOT a happy girl that first day because she asked for me around 7 AM but I never got a call about it. I had assumed she would probably be drugged up and sleep most of the morning, so I didn't set the alarm or anything. I showed up around 8 AM and she was fit to be tied that I took so long to show up. She told several people and I did NOT get a call but it also was probably right around shift change time.

I think she likes the couch here at our house instead of her bed is because we can't figure out how to get her onto her left side that she prefers in her bed. Her bed is up against the wall but she likes to sleep FACING the wall, so basically there is nothing to support her back the way she likes to sleep. The right side is fine but she doesn't like to stay on that side very long, so with the couch she can change from left to right sides easily enough with having the back of the couch to use to put pillows there. Plus, she can watch TV this way, no matter which direction she is facing.

Today was definitely better. The only catch is we are trying to stretch her pain medications out to 6 hours instead of every 4. The prescription says 6 but I know in the hospital, they allowed her to have these every 4. She recently asked when her next ones are so she can have those & then go to sleep. It's in about 10 minutes (well...technically it's now but I'm stretching those 15 minutes).

Slowly getting better, baby steps, baby steps. Unfortunately, she's in a hurry to get back to normal. She feels icky & wants to just be able to get up and go back to her normal life. I'm thinking she's not convinced she will ever be normal again.

[Beckymk]

P.S. I forgot to ask you how it went with visitors? You guys weren't in that long so hopefully you weren't bombarded. Tracy

I'm thinking Carolyn's first shower will be like that because -- you should SEE how much icky, sticky tape crap is still stuck to her -- even where the catheter (sp?) was taped to her leg!!! Whatever they use there is SUPER, SUPER Strong and I think I'm going to have to take a scouring pad to it or something! LOL!!!! I have been working on it a little at a time but since Carolyn doesn't like to sit for too long yet....she basically has a purply/red tape residue thigh. Then on her back...they took the dressing off and the nurse was wondering which resident taped her up because he must have used an entire ROLL of tape on her, she just kept trying to undo her & saying things like "he taped this all the way across her shoulders!! Oh my!" and from what I gathered he was making absolutely certain that dressing wasn't going to go anywhere, more than necessary & more than the nurse usually sees apparently. It's just awful...I know she must feel gross with all the residue on her but we can't wash it off yet.

As for visitors, she only got 2 which were a couple from our church before she went into surgery. That was a good thing, she would have been in absolutely NO CONDITION for visitors!!! I did get pictures though of her just about every day except for the last one. You would have thought I would have gotten one for the release day but basically she didn't change much from say Thursday's picture to Friday's, so I figured why bother. LOL!
I asked her if she wanted me to video her first walk to which I got a very nasty NO reply. She didn't seem to mind the daily pictures though (she told me she wanted to document it before we went in). I know she will HATE the pictures right now but maybe some day she will appreciate having them to use as to help those on the pre-surgery side. I know it certainly helped me to see things as they progressed. I know our old pastor was planning on visiting on Saturday if we had still been in there.

She did have a neighbor friend drop by today for just a few minutes to drop off a gift to her & that practically wore her out to just go stand there at the door for a couple minutes. Yes, I was the mean mom, I had HER go to the door and stand there but I'm trying to get her up & moving more, so rather than have her friend come in to see her on the couch, I made Carolyn get up and go to the door. Otherwise, I think Carolyn would literally lay on the couch all day long & I know that's not the best way to heal.

[sccrm08]

Becky,

Rubbing Alcahol should take the tape residue off easily. My oldest daughter put it on cotton balls and worked at it a little bit at a time while I was laying down. It did not hurt, just keep it away from any open sores.

[Beckymk]

The rubbing Alcohol is working GREAT!!! Thanks for letting me know. I'm pretty sure I wouldn't have thought of it.

Her back is still stuck with tape but I just got her purple legs cleaned up today. I think that was bugging me more than her.

One thing I was able to do today since all the boys went to school was, I was able to give her a SHAVE. I think that alone lifted her spirits. She couldn't stand the stuble on her legs & armpits. She did shave before she went in but it still got stubbly. I can not wait until she can take an actual shower. I'm fully expecing that to make a huge turning point for her. Then the next trick will be for her to figure out how to do all this stuff on her own while working within the movement restrictions.

She did have some bowel movement issues and those resolved yesterday so I think we will be seeing a lot of improvement soon. She is eating better now and although it still hurts to hold her head up for any length of time. She is saying her worst pain is her shoulders and left side which makes perfect sense. She had a bit of kyphosis so not only did they straighten her, they turned her in the shoulder area. Basically, she is the most sore in the area they did the most work.

She is also able to go a *wee* bit longer before the pain meds are needed. Basically, I don't ask her, I wait for her to ask when she can get the next dose. There was actually a point yesterday where she told me she had 0 pain!!!!! That was the first time EVER. Of course, it was with medication but still.

Right now since it's just preschool shows on, she is actually doing homework! They are reading Dances (Dancing?) with Wolves in English and they are finishing this week, so she is reading that right now.

I think I'm going to leave it with the tutor coming over tomorrow but I'm fairly confident they will NOT get 2 hours in there but at least she can come over, meet, kind of go over stuff and just see how things are going. I'm on the fence for it but Carolyn *IS* bored. She has never been my sit around and do nothing child so that alone is pure torture for her. There was a Jon & Kate plus 8 marathon yesterday that she watched most of the day but I know that was tiring too. I think she just had it on because there was nothing else to watch and she really isn't up to physically doing anything yet as much as she wants to. She walks around but it hurts so doesn't want to do too much but is at a loss for what to do with herself.

[Jennybear]

I no how she feels about getting bored, I almost died of boardum. I just watched movies and JOHN AND KATE PLUS 8! lol. Except I loved that show lol. The first week was very busy though because my grandfather actually passed away the day after i got home So i was constantly in the car But i basically lounged around, and wore out my poor TV. I had my game boy and Xbox though, which kinda helped. Hope she finds something fun she can do that doesnt hurt her, try some movies or books

[Beckymk]

Back to work

Carolyn's dad is goofy, he's always telling her to "get back to work" tongue in cheek.

Today the tutor has come over (she's here now), so it's literally back to work time. At least it will give her a couple hours of NOT being bored.

It's just a matter of keeping the boys contained. The 5 year old is the worst! Luckily, he goes to preschool tomorrow so we are going to try earlier for the tutoring -- although it will be something like 5 hours!!! YIKES!!!

I'm just staying out of the way right now but near enough that I can help if she needs to shift or whatever.

She really IS doing very good considering she just had the surgery last Monday. Although she tried to give me a heart attack already as she was laying down & I have always helped her sit-up. The tutor was looking for something and Carolyn said she would get it. Next thing I know she had sat herself up! That was the first time she had done that....I nearly fell over (and promptly YELLED at her for doing such a thing!). I know I'm trying to get her more independant but she could at least WARN me before doing some insane move like that.

[laurieg6]

It's really incredible that Carolyn is getting tutoring so soon after the surgery. Is she off all the meds already? How is she able to concentrate on her school work so soon? She's only a week out and doing so great - I'm really happy for her (and you). How long is her fusion?

Alexander was in no shape at 8-10 days post-op to do much other than take walks and watch movies. He was off meds by around 2.5 weeks post-op but your daughter is having an amazingly speedy recovery. Way to go Carolyn!

I can understand your concerns about her doing too much too soon...