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Beckymk
03-13-2009, 11:42 PM
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
03-14-2009, 12:20 AM
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
03-14-2009, 12:30 PM
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
03-14-2009, 02:15 PM
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. :p

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
03-14-2009, 07:29 PM
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
03-14-2009, 07:31 PM
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'
03-14-2009, 11:08 PM
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!!:D

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

alwayzsomethin'
03-14-2009, 11:12 PM
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
03-14-2009, 11:22 PM
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
03-14-2009, 11:35 PM
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
03-15-2009, 02:21 AM
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
03-16-2009, 10:45 AM
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
03-16-2009, 06:20 PM
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 :eek: 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
03-17-2009, 06:08 PM
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
03-18-2009, 01:03 AM
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...

Pooka1
03-18-2009, 07:38 AM
That is an amazingly fast recovery. My daughter was still on pain meds for it seems a bit longer than many of the kids here.

But if you recall, in that one video, the surgeon can clearly be heard saying some kids are back in school after a week.

I really doubt my daughter could have handled two hours of tutoring one week out although she was back full time at 3 weeks and 5 days. She could have arguably gone back full time at 3 weeks (absent tests which she was NOT prepared for and which I wouldn't let her take for that reason).

Beckymk
03-18-2009, 09:24 AM
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?



I really doubt my daughter could have handled two hours of tutoring one week out although she was back full time at 3 weeks and 5 days. She could have arguably gone back full time at 3 weeks (absent tests which she was NOT prepared for and which I wouldn't let her take for that reason).

Oh, Carolyn is most definitely still on the pain meds!!! Probably more than she should be. She's on Tylenol 3 and technically the bottle says every 6 hours but I was told anywhere from 4 -6 is OK. Preferably closer to 6 but Carolyn is still closer to the 4 hour mark than 6 hour and the maximum dose for her weight. Sometimes we can stretch it out but sometimes she is asking for the next dose before she can have it.

Her fusion is pretty long. I think it's from T-3 to L-3 basically. I don't have the exact numbers but I know it wasn't *all* the way down so she will still have some movement but it was both thoracic & lumbar.

There is absolutely no way I see her going back to school in 3 weeks. Then again, I didn't see her actually surviving 2 hours of tutoring either 1 week out from surgery but she did it. She doesn't have to sit for the tutoring though, she is allowed to lay down on the couch, they can take breaks and whatnot. I know she can't sit for more than about 5 seconds at a time. She also doesn't get up and walk very much at all even though I know she should...so although she's doing good I don't think it's any super-sonic speed recovery. She usually just gets up once or twice a day to do a quick circle around the kitchen/living room area and that is about it. I think maybe she walks a total of 5 - 10 minutes/day based on the circle walks & going to the bathroom. I think it's just like anything else...in some areas she is probably recooperating faster than others but in other areas she is taking longer.

Her follow-up appt. is April 15 and then we will decide about school at that point, so I know she is out at least until then. In addition, our school has a funky thing where there are a couple days that *only* the Juniors go to school, so I'm thinking I should keep her out until after that week anyway...which is about the original timeframe we were considering. It would be around April 26 she goes back. The catch 22 is as soon as she goes back to school, even if it's part-time the home tutoring stops. So, you have to be positive when you want to get back into the groove.

Today the tutor is coming over from 9 AM - 2 PM. I *really* don't see her lasting that long, I know they will take a lunch break and stuff like that but still. I'm thinking the 9-11 might be all they get in. Carolyn never took any breaks yesterday but I think it's partly she is like me. Once she was going, she just wanted to forge ahead and get it done since she was in a groove with it. They pretty much just did Science yesterday and that was it.

Thursday is a day off which is good because it's Carolyn's first shower since surgery day and I know she's looking forward to that.

Then Friday it will be 4-6 again. I know she can't get more than 10 hours/week, so it's just a matter of how it's spread out. This week is mostly just trial & error I think on what works.

Pooka1
03-18-2009, 12:20 PM
Carolyn never took any breaks yesterday but I think it's partly she is like me. Once she was going, she just wanted to forge ahead and get it done since she was in a groove with it.

I think she might surprise you. It seems like she might be able to return far earlier that you suspect, if only out of boredom!

That's my sense from what you have written. Of course I'm just guessing!

Just curious... did your surgeon suggest starting the tutoring at one week out?

I can't recall our surgeon ever telling us anything about when my daughter was or was not allowed to go back to school. The only thing about it was in the written material he gave us which said most kids are back to school after 3 weeks or by 4 weeks. At her six-week check-up, he didn't ask about school so I just volunteered she had returned about two weeks prior to the appointment.

Tutoring never came up with the surgeon because apparently here in NC, tutoring kicks in only if the child is expected to be out longer than 4 weeks but the literature he gave us claims most kids are back by then so they don't qualify. At least that's why I think the surgeon never mentioned it.

Beckymk
03-18-2009, 01:46 PM
I think she might surprise you. It seems like she might be able to return far earlier that you suspect, if only out of boredom!

That's my sense from what you have written. Of course I'm just guessing!

Just curious... did your surgeon suggest starting the tutoring at one week out?

Yes. Basically, they were the ones who told me to talk to the school about homebound services. They start here if the child will be out of school more than 2 weeks.

There was a form that basically the Doctor's social worker filled out and sent to the school. It has a part of "Date student is able to start homebound tutoring:" and "Date student is released to return to school:" They wrote 3/17/09 for the start date and 4/21/09 as the date to return to school. With a notatation that return to school will be discussed at her one month post op appointment.

That's the reason it started on the 17th, because that is the paperwork they got. They did tell me that if she wasn't up to it, we didn't *have* to start then but that is what they put.

So far, she has been doing good. It's almost 1 pm and the tutor has been here since 9 AM and they are still cruising along.

Beckymk
04-01-2009, 01:54 PM
I just thought I would give an update on Miss Carolyn!

She still seems like she has a long way to go but she also has come a long way.

She barely takes the pain meds at the moment. She goes at least 24 hours between needing some doses. I just found out usually when she asks her pain is between a 2-3 so I think that's low enough that we will try say some extra-strength Tylenol vs. the prescription level of it. She hasn't had any yet today. I'm thinking after the tutor leaves, she might ask for some.

We did go out to the mall once (maybe a total of an hour from the time we left until the time we got back home) & then out the next day just to the library & fabric store for a *very* short time but I think the combination of both of them wiped her out as she came home and then took something like a 3 hour nap that day.

Probably the most fun part is that she has decided she wanted to enter a pageant since she can't do sports next year (well...she *could* do some but has chosen not to). She is pretty motivated to want to get up enough to go shopping for clothing. It is the National American Miss pageant. The pageant isn't until Labor Day so it basically gives her a goal to work toward now. There is no swimsuit competition (and make-up not allowed on younger kids so it's not like the type you see on TV) and basically the only outfits she *has* to have is a formal wear & business attire for the interview/personal introduction part. One optional event is casual wear though & she wants to enter that. We just got the official paperwork so we have been having fun with looking at dresses and things on-line. I know she is hoping she is well enough to maybe go out and do a little shopping next week. This week is Spring break and all her brothers are home so don't really have time to do anything right now.

momw/scoli
04-02-2009, 08:50 PM
Becky,
The pageant sounds fun! I'm glad to hear Carolyn is doing better. The worst will be over for you when my Emily has her surgery. Thanks for the update!

Becky
Mom to Emily 14 having surgery May 28

Beckymk
04-02-2009, 10:13 PM
Hang in there Becky!!! I know how nerve wracking it is to be on the pre-surgery side.

Although...I STILL haven't fathomed how some people are totally up and going quickly after surgery. Carolyn is doing well but she still isn't exactly back to her old self yet. She still needs help with lots of stuff, every day she gets a bit more back to being independant but not anywhere near self sufficient. She certainly isn't one that is ready to go back to school before the full 6 weeks (and I'm still iffy on that amount of time since sitting is still the toughest part for her).

I'm still not thinking Carolyn will be as peppy as the girl we saw when we were in PICU who was 1 month post-op!!! Her appointment is April 15 and that isn't that long off but I just don't picture her feeling that well in 13 more days.