Wow...Did that really just happen?

[Tiny]

Tara came home from the hospital yesterday after having her surgery on Monday. This is the first chance I've had to get on here for an update. Her surgery was on the long side at 9 1/2 hours. The reason being since she wants to go back to soccer he put in the most amount of screws possible and she had very small pedicles so they had to keep xraying often for exact placement. Secondly he used a different technique to acquire the grafting from her hip which uses a smaller incision and not having to cut as much muscle. It has to be mixed with some bone from the bone bank. Anyway, with all the prep work before surgery she was under anesthesia for 11 hours. So she had trouble waking up and she continued on a respirator for 9 hours after surgery. It totally freaked her out. Come to find out later, she thought something had gone wrong and when I tried to tell her the tube would come out right away, she thought we were just trying to protect her from the truth. That was the only time she was panicked during the whole presurgery and since surgery. The rest is pretty much how everyone desribes it. Passed out the 2nd and pretty much the 3rd day, then a little better every day. It was certainly gruelling not only for her, but for her dad and me as well. He was fortunate to be able to get away from work the whole week and we played tag team and stayed 1/2 way refreshed for her.
She is resting much more comfortably at home, but here's the next set of questions.
-How long now before she can comfortably sit in a chair without loading it up with pillows?
-What were some comfortable places your kids found to rest?
-Were your kids mostly laying with just a little sitting?
-What were some foods that sounded good in the beginning?
-were there a lot of sores around the incisions site...little scratches and little wounds? What are they from?
-was there a lot of swelling and will the back continue to move as the muscles all adjust?
-what are some mile-stones now that she is home? (some of you have said three weeks, but how about some shorter term ones?)

She is on oxycontin, 1 every 12 hours, slow release, and roxicet 7.5 mg every 4 hours. It seems to be working for the pain. She is on Merilax and to offset any constipation and Zantac for any stomach upset. So far, so good.
She goes to the bathroom by herself, goes up the stairs to her bedroom by herself, brushes her hair and teeth, washes her face, braids her hair. She walks out on the deck for maybe 5 minutes, or walks around inside the house. I think she's doing great, but on the 2nd and 3rd day, I couldn't have imagined that we would EVER be here in a week.
Linda

[jc3]

hi tiny
sounds like your daughter is doing great. some answers from my daughter's experience to some of your questions are:
I'm not sure how long it took my daughter to sit comfortably in a chair without pillows, but it took a little while. It wasn't the first week or two i remember that, but my daughter took a little longer to do everything then most of the girls. My daughter was most comfortable during the day sitting on the couch with pillows in back of her and her legs on an otterman. Alot of people say a recliner is really comfy for them, but we didn't have one. My daughter was not comfortable laying in her bed and slept on the couch for quite a while. We have a very wide couch that is so comfortable. My daughter couldn't eat in the hospital for about 5 days because they kept saying that her stomach wasn't awake. She was starving though and had a really big appetite when she was allowed to eat, the dr. said to give her alot of red meat for her blood levels. As for sores and scratches on her back i don't remember noticing that, but she did have some swelling i remember. Someone told me at the beginning when we get home we wouldn't notice much change in her day by day that we would notice changes week by week and it was so true and for the 3 week mark that was her biggest turn around point. We had our first check up at the dr. at 3 1/2 weeks post op and after that she started really doing alot more. So hang in there, be patient and she'll do fine.
Good luck
Jennifer

[nikyergen]

Glad to hear Tara did so well. I agree with Jennifer. The three and half week mark is the biggest, and then hold onto your hat. Off she goes and she will over due too. I have finally quit trying to keep up with Crystal. She is 9 1/2 weeks post op and on the go. The pillows are going to be around for a little while. You may also suggest to her to take one to the rest room with her. That way the cold back of the toilet won't make her jump and will also giver her some cushion if she should need it.

Keep us posted on how she is doing.

'til later,
Nikki

[Mary Lou]

Linda,

It sounds like things are going very well for you and Tara. Jamie (who is five months post-op) is here reading over my shoulder and here's her answers to some of your questions: sometimes she still needs to use pillows when sitting on certain chairs; she said sometimes the floor was most comfortable to sit on, however right after surgery, she spent most of her time sitting in a hard, high-backed rocking chair; she spent very little time lying down, because she seemed to get more stiff if she did; as for the scratches, she still had a bandage on even once we were home and she also had steri-strips on for almost two months, but from what I remember, she didn't have any scratches; food, hmmmm, in the beginning, there wasn't much of anything that tempted her. I would concentrate on healthy things. Jamie wasn't really hungry in the beginning until she started moving around a lot. Jamie never left the house until she went for her first check-up which was about 2 1/2 weeks post-op, however, her surgery was in the winter months, so we were a little nervous about going outside unless we had to. Like others said, at three weeks, she was starting to feel more like herself and I think that was also about the time she started eating much better.

Mary Lou

[susannajon]

Hi Linda,

We got a La Fuma recliner, which is a small light recliner meant to be used as a deck chair. It folds for storage, and has an aluminum frame and a mesh seat. You can find these at most garden stores for about $150.00. We cushioned it with two bed pillows, and she pretty much lived in the thing for most of her waking hours. She would tilt it unpright and sit up in it for maybe 2 or 3 hours a day in the beginning, but spent most of the day reclined, or in bed.

We also got a 4" thick memory foam mattress topper, which helped make her bed bearable for her.

As far as foods, my daughter craved cheese, eggs, watermellon, grapes, and chicken soup. I got a canister of Benefiber, and added a few teaspoons to her soup and drinks. I made sure she got that a couple times a day to help with the constipation. Don't let her go more than 24 hours without a BM. Glycerine suppositories work every time if fiber doesn't help.

The little sores around her incision could be from an allergic reaction to the adhesive in the tape and/or the steristrips. I am very allergic to tape, and it causes my skins to get weepy welts that turn to scabs. Benedryl cream helps me.

As far as swelling, my daughter had very little swelling and no bruising. I could not believe how good she looked. She was extremely sore and had big numb areas, and itched and burned when they started to "wake up".

The next few weeks are going to be tough. The 3-4 week mark is really the big turning point. The next few weeks she will probably make very slow progress. Her appetite will return, she will be able to sit up for longer and longer. Try to get her outside for little walks. My daughter wasn't able to do much more than walk out our front door, 30 feet up the walk to the sidewalk, and then back up our front walk and up the steps and she was pooped. By the end of the third week, she could go a few blocks and then back home. For me the big turning point was 3 1/2 weeks when she slept through the night without waking up for a pain pill.

She is now 2 1/2 months post-op. She's back to school full time and has very little pain. She does still get tired more easily than before surgery, but she's getting better every day with her stamina. She still needs a little pillow or cushion for long car rides. She takes an occasional pain pill if she's over done it a bit, but thats every few days, certainly not every day.

I think the most important thing to remember that EVERY child is different, and they get better at their own pace. There are kids like Chrystal (Nikki's daughter), who was in great physical shape before surgery, and seems stronger and hardier than the average kid. There's our little superman Alex (Lura's son), who despite his other health challenges is jumping on the bed a few weeks after surgery. Compare them to my daughter, who's a bit of a couch potato and has a low pain tolerance, who's been taking a little longer to hit those milestones. By the way, my daughter's reading over my shoulder, and she asked me to send best wishes to Tara, and to reassure her that she will be feeling better in no time!

Hugs to you!

[annie16]

Hi!
I think that is absolutely wonderful that your daughter is doing so well so soon. I too asked my parents if I was ok, and thought there was something wrong that they were keeping from me. To answer your questions:
-How long now before she can comfortably sit in a chair without loading it up with pillows?
It'll probably take about 3 weeks, but remove a pillow everyonce in a while and she'll get used to it.
-What were some comfortable places your kids found to rest?
I wanted to lie in bed the most, however thats not the best. The more she sits up, the better. For about the first 2 weeks I sat in really weird positions, but they were really comfortable.
-Were your kids mostly laying with just a little sitting?
I would sit about 30 min the first day I got home then I added 20-30 min of sitting every day to that original 30 min untill I was able to sit for long periods of time.
-What were some foods that sounded good in the beginning?
I didnt have much of an appetite in the beginning, but candy sounded good, however too much is not good.
-were there a lot of sores around the incisions site...little scratches and little wounds? What are they from?
I did not experience that, ask your doctor about that one
-was there a lot of swelling and will the back continue to move as the muscles all adjust?
I wasnt that swollen, I was very tender. Then the tenderness goes away for a few months then it will come back when she starts getting the feeling back near the incisions.
-what are some mile-stones now that she is home? (some of you have said three weeks, but how about some shorter term ones?)
Some milestones included, geting up on her own (out of the bed), going out for a short trip, driving (if shes over 16), showering on her own, cleaning her room, picking something off the ground. She'll have little milestones that her body will just do automatically, then when they happen they are so much fun to celebrate.
I hope she keeps doing well. Much love.
Annie

[nicoles mom]

So Glad Taras Surgery Went Well And Your Home. My Nicole Is Going Back To School Part Time This Wednesday. I'm Very Worried About Her Going Back But I Know I Have To Let Go. On May 30th She Will Be 2 Months Post-op. She Is Still On Pain Meds And Taking Them Only When She Needs Them. Nicole Took A Little Longer Than Most Of The Other Girls And Is Dealing With Wearing A Brace Now. She Is Still Using Pillows And Was Most Comfortable In Her Bed. Nicole Had Little Scratches Too That Disapeared In A Few Days. I Don't Know What That Was From. She Had Very Little Swelling But Her Incision Is Still Numb And Hurts When You Touch Her Back. It Took Her Awhile To Get Comforable Sitting Anywhere. At First She Wasn't Eating Or Drinking With In Two Weeks She Was Back To Eating The Way She Did Before Surgery. Had Lots Of Problems With Bm And Pain Meds Thank God Thats Over. She Fanited 3 Weeks Ago And We Took Her To The Hospital All Was Ok. I'll Have To Say This Past Week She Has Been Doing So Well. Each Day She Is Getting Better And She Is Doing More And More. Pt Has Really Been A Blessing I Found A Great Place To Take Her.
Linda Tara Will Be Back To Herself Before You Know It.
Theresa

[Carmell]

Hi Linda and Tara,

Glad to hear the surgery went well and the recovery is going well. I hope the recovery has many more good days than set-back days.

Everyone else gave good comments. I just wanted to add that Braydon had those little scratches or something around his back after his VEPTR implant surgery. They were from the staples/sutures used to keep the skin open while they did the surgery. Maybe she had something like this as a surgical aid. If those areas aren't red/swollen or bothering her, its more of an odd thing than any kind of problem.

Also, if Tara were to have allergies or a cold and needed to sneeze or cough, she may find using a pillow to hug will help keep the back from hurting as bad. Kinda like after abdominal surgery. Hugging a pillow helps support the body so the coughing or sneezing isn't as painful.

Good luck and continued speedy recovery vibes coming your way!

[KRIS ATKINSON]

Congratulations Tara!, Kris

[Tiny]

Hi Everyone. Thanks for all of the advice and information. I think the first day home Tara overdid a bit. She was up and down the stairs quite a bit. So the last few days she's been slowing it way down. She's trying to prepare her body for the car ride back to the hospital tomorrow for her first post op check up. She'll get her bandages off and be released for a shower, hopefully.
She's concerned that her hips are still uneven and she looks puffy through her stomach. Don't the muscles have to readjust, and won't there be changes in her form occuring for a while? She's having back spasms and hip pain. Did anyone use ice or heat or vibrating pads in addition to the pain meds?
Thanks for the good wishes and from your daughters who sent them too.
Linda