Post op visits

[mamakay]

Hello All,
I have not been mentally ready to type here for a while.
We went to Stephanies Dr a 2nd time since surgery for him to take a better look other than the digital pics of her reaction to the stiches at the beginning of the rods.
It seems to be finally closing up and he told us to keep it clean and change the bandage(guaze) twice a day. Although we must continue with the antibiotics and come back in 2 wks.
Who ever said to measure progress in weeks and not days was so right. Ste has changed and drove in her car with her dad on Sat.
She was very tired that night and of course I was like a chicken w/my head off while they were out.
He told her she could not drive untill she was off her drugs for about a week so I know she has been toughing it out.
I just wanted to say thanks Carmel for giving me the idea of going to a wound specialist I thought about that alot but I think my Dr wanted me to just see him and if it didnot progress soon I would be looking for more help. So I just want to say I am always praying snd wishing for EVERYONE on here bc I know this is a life long journey. Carmel, you are a strong mother to be there for so many of Brandons surgeries and Linda Racine, I love SF and hope to see and thank you for looking after us.
Jennifer, I am glad we have a close timeline to compare our girls progress. It sounds like everything is going great,
Well keep in touch all and Happy Holidays, mamakay

[jc3]

post op visits

hi mamakay,
i was worried that we haven't heard from you in a while. I am so glad that things are finally going okay. I'm sure you are releaved that everything is finally healing.
Nicole is continuing to do really well. I am nervous everytime she goes anywhere as well. I can't imagine when she goes back to school how i will feel. When is steph going to go back to school?? Does she still have pain??
write back when you get a chance.

jennifer

[Carmell]

I'm glad to hear Stephanie is doing well. Good news about the wound. It sounds like the doc is keeping a good eye on her. Keep up the good work! And yes, she shouldn't be driving while she's still taking the narcotics - yikes. Tell her to be CAREFUL! I'm sure she's anxious to get back to being a healthy teenager. Good luck with that too!

Jennifer - I glad Nicole is still doing well to. Keep up the good work! It's kinda funny to read your "worried mom" posts here, and then read her posts on the other board. You'd almost never know they were about the same person - LOL. Funny to see the different perspectives (mom -vs- patient). Hopefully you both have a good sense of humor about this recovery process. Sometimes being able to laugh about our "trials" is the only way to get through them in a positive way. Braydon and I try to laugh as often as we can - it makes the days (and nights) go by a little easier.

Take care all! Thanks for the updates! Best wishes to everyone in their recovery process, and to those facing surgery in the near future.

[jc3]

hi carmell
I know it's funny that you see nicole's posts on the other board and read mine here. I go on there to see what she writes sometimes and it's funny to see how at 1 month she was asking when is the pain going to go away and then a week later how much better she was feeling. How is Braydon doing? When will he have to have another surgery?
Well thanks for the great advice to me and nicole!
Jennifer

[Carmell]

Hi Jennifer,

I'm glad Nicole has a way to share with others who are going through something like what she's doing. I can't imagine being a teenager and having such an invasive procedure done. Talk about feeling like an outcast. I hope she enjoys hearing from the other teens on the list.

Thanks for asking about Braydon. He's doing very well, surgically. He will have his pre-op appt on Feb. 8, and then surgery is scheduled for March 21. This next surgery will probably be a rod exchange - both rods are expanded to the last notch, so he needs longer pieces placed. The exchange surgery is a little more involved than the expansion-only surgery, but still only a 2-day hospital stay. He should be back to school at least part-time within a week. This will be his 7th expansion surgery and second exchange for both rods.

Take care and I hope you can have a wonderful holiday season! Try to get a little rest for yourself. I'm sure you are exhausted by now. I usually need several weeks to "re-group" and be ready to give 100% outside my family. I'm so glad you have shared your experiences. I feel like I have a new friend. Take care, my friend.

[mamakay]

Hello Jennifer and Carmel,
Thank you for your replys.
Steph goes back week after Christmas to see the Dr again, untill then I have permission for her to be out untill 1/15/05.
She will take finals the first week of Jan. Then we will have to do some schedule changes bc she used to take track and that's out for now. Also some classes had to be dropped since she missed the last 6 weeks of school. How about Nichole? Will she go back or has she gone back? This seemed like the only "good "choice of time to do this sugery as if we had a choice..
Did Nichole lose any classes over it?
Ste is taking the antibiotics and I have to make her take a valium once in a while at night bc she has a hard time getting comfortable and that seems to be the frustrating part of her day. She has pain if you touch her back and in her shoulderblades.Is Nichole taking anything? How are her ribs?Did you go for your post op?
I noticed Steph has responded to some site (probably spinekids) She feels bad for some that have bad curves and no surgery date or braces,etc. I will have to go there and see if she and Nichole have talked to eachother! Carmel, how does Brandon handle all this? What a strong person this must make out of our children..
You said exactly what Ive been thinking, now I almost have the 100% energy I need to deal with Christmas and family. Not much time left to squeeze in the month that went by in a blurr and catch up with the season. Merry Holidays, mamakay

[jc3]

hi carmell
I'm glad also that nicole is finally talking to other girls about her surgery. Before surgery she wouldn't even talk about it and didn't want to talk to anyone about it, so i thinks it's great that she is going on the spinekids. You must go on an emotional rollercoaster with Braydon's surgeries. It must be really tough on you as well as him. Will he have to have the surgeries until he is finished growing??
well thanks for all your support through my emotional rollercoaster
jennifer

[jc3]

hi mamakay
i am so glad that things are finally calming down. for you. I feel bad how stressed you must have been. Nicole still takes vicoden. She has 1 pill in the morning, usually 1 in the late afternoon and then 1 again at around 11 at night before bed. I would like her to get off that middle one. I really don't think she needs it because there have been times when we were out and she missed it and never complains about the pain. I should try an extra strenght tylenol. The dr. said no advil for a year. What is your daughters name on the spine kids? Nicole's is "Nikki-Wishful Thinker. Nicole is going to go back to school after x-mas break and we'll see how it goes. If it is not good she will stay home, but i really think she will do fine. She has been taking some kind of outing everyday basically. She doesn't want to sit in the house anymore she is getting very bored. So everyday she says "where are we going today". Even if it's a visit to my mother-in-laws i try to get her out and she is also doing physical therapy, which she hates. Nicole is doing fine with the tutors. I wasn't sure what you meant by lost any classes. I don't think nicole has she did get a report card and the tutors all say she is up to date on everything so when she goes back she should be right where the class is. But i wasn't sure what you meant by that. Nicole's ribs don't really seem to bother her. She never mentions them so i don't ask. We did go for post op when she was 3 1/2 weeks and everything was fine and they told us to come back in three months. I can't believe it's been 6 weeks. It is going fast and i'm glad for that. It's been an emotional rollercoaster.
Keep in touch about steph's progress. Now that things are better enjoy your holidays
jennifer

[jc3]

hi

hi mamakay
i was just on spinekids and it's so funny because my nicole posted a question about if she can wear heels on x-mas eve. Can you believe she wants to wear heels??? So she is asking kids on there if she can and i think your daughter responded to her because it say "hey nikki, i also has surgery on nov. 3rd and the girls name was stephanie. I guess that's your daughter?? and the other night nicole said to me "hey, this girl has surgery the same day as me". I think that's great.

Jennifer

[Carmell]

Jennifer - yes, Braydon will continue to have surgery to lengthen the rods until he reaches skeletal maturity (for boys, its about 16-18yrs old - he is 9 now). The lengthening is done every 6-8 months, depending on growth spurts, etc. The good news is that they are perfecting a rod that is a SELF-LENGTHENING device! That means the patient won't have repeated surgeries to lengthen the rods. I'm not sure Braydon will be able to benefit from this new technology, but its wonderful to know the future patients will not have to endure back surgery every 6 months. I'm so grateful for modern medical technology!

Kay - I'm glad to hear you are getting back to your 100% capacity. Don't try to "catch up" on what you missed - wasted energy. Instead, make the very best of the day today! And make tomorrow that much better. You can't change the past, so don't try. I know there were things you probably needed or wanted to be part of, but its all over now. You will be able to concentrate better on the holiday season if you focus forward (this sounds like a lecture, but its not intended to be, I promise!). I know your family will have many things to be grateful for and to enjoy this season. Stephanie is doing well. Each day is another day to celebrate. Keep up the great work! Happy Holidays to all!

[mamakay]

Hello Carmell and Jennifer,
Thanks for your concerns and support, it is hard to believe it has been what 6 weeks since our girls surgery and how lucky we are to have strong moms like Carmell who have battles of their own.
Carmell how is your older daughters scoliosis? I am thinking of Brandon and his surgery too.
The Extreme Surgery has been on a few times and there was a case that seemed like his. I can't believe you have gone thru so many surgeries,how can you have patience with us who have a hard time with one?!You must have nerves of steel.
Jennifer,yes I think that was Ste talking to Nichole.She goes in waves about discussing her scoliosis so I hope she is giving and getting advice that helps.She was frustrated the administrator reprimanded her for asking if anyone had seen any movies so don't know if she will be back on for a while. She said sometimes you just want to get your mind off your back mom!
She had to drop Chemistry and Geometry bc missing 6 weeks of class there was no way to do the class work and study for the finals which she must take by Jan 15th.She kept 3 other classes and had extra credits from a class I made her take in summer.
Then she (if Dr says) can go back in Jan. eek!
Did Nic start her tutors soon after surgery and do her finals?
Can I ask how old Nichole is or what grade she is in?
Ste was not able to start any work untill just 2 weeks ago, so that was about 4 weeks w/o any school contact.

I hope everyone is having a Happy Holiday and want to say bless you all for helping me,untill later..kay

[Mary Lou]

Hi Kay...

I know you were directing your questions to someone else, so excuse me for butting in. My daughter Jamie who is 13 y.o. had her surgery two weeks ago today and started her tutoring (at school) yesterday! I was shocked when the doctor said she could start two days before he even sees her for the first time after surgery. Yesterday was Jamie's first time out of the house since coming home from the hospital and even with only one hour of tutoring, she was so tired when she got home. She took a nap almost immediately after getting home and she hasn't napped in days.

Okay, any advice/questions I should be asking tomorrow? Surprisingly I only have a few questions wrote down at this point. I saw her x-rays from the operating room while she was still in recovery, but I can't wait to see before and after x-rays side by side!

Thanks for all your help. Following your interactions on this forum helps to give me an idea of what to expect in the future. And you are right, Carmell is a great supporter. I don't know how you do it either Carmell. I see your name showing up in more places than just this forum, so I know you are involved in a lot more than just helping us here.

Mary Lou

[Carmell]

Mary Lou,

I'm glad to hear Jamie is doing well! I'm sure she gets fatigued very easily - that's part of the recovery. She's had a HUGE surgery, and having a good and uncomplicated recovery means she still has to recover from the anesthesia, narcotics, new position of her spine, and everything else involved. This is HUGE. People don't realize how huge it is. Sometimes docs don't even have a good perspective of the recovery time because they don't see the patient 24/7 during the weeks after surgery. EACH patient is different and requires a different recovery. If Jamie is having tutoring AT SCHOOL only 2 weeks post-op, she's doing fabulous! If I were her, I'd still be taking a couple of naps each day, to allow my body to rest and continue to recover. She's doing great - and so are you, mom.

You didn't list what few questions you have for the surgeon, so I don't know if I'm repeating things you already know. If so, sorry in advance ;-)

I would ask about the incisions and have the surgeon tell you how they look/appear. Can she get them wet? Are showers okay now? Do you need to do anything special to keep her skin from being irritated? Questions like that...

Also, I would ask about physical activity. She's still very early in her recovery, but maybe if she has a goal of being able to do something in the near future, it will lift her spirits a bit.

If she's having problems with bowels or GI things, ask about that.

I'm sure you'll think of the specific questions you need to ask.

Thanks for your kind words, Kay and Mary Lou. I am not any stronger than anyone else on this list. My therapy is being on lists like this to learn from others. I belong to lists dealing with kidney issues, clubfoot issues, limb discrenpency issues, several scoliosis issues, VACTERL issues, and probably a few others. It sounds like a lot, and I probably come across as a know-it-all, but its only because I like to learn from everyone else's experiences. Also, by sharing a bit of our experiences, my own life doesn't seem to be as filled with trauma as I sometimes think. My kids are the "easy" part of my life. My husband has some medical issues that they just can't confirm. They are suspecting MS. We won't know until February when we meet with an MS/demyelination specialist. He is very frustrated and his body hurts all the time. It's not easy being patient with someone like that - ugh.

My daughter's scoliosis has been stable for 3 years now. She has a 35 degree lumbar curve, with a significant rotation, which makes it easy to see that she has scoliosis. Her waist is not even, her right hips sticks out, her rib hump is very obvious when she bends over, etc. She has chronic back pain, mostly up between her shoulderblades where the rotation is more evident. Exercise and back strengthening helps some. She doesn't need surgery, and the ortho feels that she's stable enough that her chances of progression are minimal (good news). Hopefully he's right. She also has hypothyroidism, so when her thyroid is off, her whole body feels the effects. Because of a weak back, the pain and discomfort seem to settle there. Something she deals with.

Braydon loves life. I wish you could all meet him. He does have his medical challenges, but there are so many more children/people who have daily struggles that we can't even imagine. His semi-annual back surgeries are just another vacation from school for him. He takes this in stride, like anything else. He truly keeps my spirits up and keeps me thinking positively - why not? Life is good!

I hope everyone continues to have a Happy Holiday Season! Thanks for letting me ramble.

[jc3]

post op visits

hi mamakay
I am so glad to hear that Step is coming along nicely. I'm sure you are finally relaxing a little bit. I can't believe either that it has been six weeks. You asked about nicole. Nicole is 14 years old and in 9th grade and that is great that they have spoke on the "spine kids board". I can't believe the moderator said something to her about posting about a movie. Those girls talk about all different things. I hope it doesn't make her not want to go on anymore. Nicole started her tutors when she was 3 weeks, she is caught up in everything but after you asked me about if she had to drop anything the school had called me that day and said she may have to drop "chef's class", which is an elective anyway because it's cooking and she wouldn't be able to make up all that cooking they said. But they are not sure yet. They said they would just erase it like she never even took it, but otherwise the tutors keep saying that she is caught up and where the class is, so we'll see what happens. Has steph been out of the house yet?? Nicole is going back to school January 3rd. I am nervous, but i think she will be fine. I think she is ready, we'll see how it goes. Keep me updated on how everything is going there.
jennifer

[Mary Lou]

Carmell....

First of all, you don't ramble any more than the rest of us, so please don't ever feel you need to apologize. We are all here for the same thing...information, support, and a place to vent when we need to do so and knowing that no one is going to put us down for it. We all need to vent so we can keep our sanity to continue to support our children and in your case, your husband as well.

We all know how blessed we are with Jamie's recovery. I was a little nervous about her going to school for tutoring so soon, but we thought it would be good for her to get out of the house and see a few friends/teachers. With it being Christmas season, the malls are always to packed right now to even take her there to walk, so tutoring at school is a good option atleast for this week. Our biggest hurdle has been sleep--it has only been the past few nights that we've managed a good nights sleep. She usually lays down several times per day and sometimes she sleeps and sometimes she doesn't. She has been going to bed around 9:00 p.m. every night and has now started to sleep in until 9:30 a.m. or so. She learned while still in the hospital to rest and/or take a pain pill before she got to tired or the pain got too bad.

I guess we are on the same page when it comes to questions. Her doctor is very good with answering questions and keeping us informed. We were told before leaving the hospital that she could shower ten days after surgery as long as the incision was closed. She has had several showers, but we've avoided getting her back soaked for fear of loosening the steri-strips. Now our concern is will he pull them off tomorrow or give us some time to get them good and wet and let them come off. Her bowels were a serious problem--in fact it kept her in the hospital an extra day because they hadn't moved. That has straightened itself out thankfully. The physical activity is a real concern. I'm curious as to what she is actually allowed to do. She has some restrictions which we are told are for the next three months.

Thank you for your "she is doing great-and so are you mom" comment. None of us do what we do for the praise or thanks, but Jamie thanks me regularly even for little things and it is nice to hear it from others as well. It is like I tell Jamie, God only gives us what we can handle and sometimes I wonder about that, but if it doesn't kill us, it sure makes us stronger people! I honestly believe our children (and us) will be much better and stronger people for having gone through all this.

Thanks again Carmell. In your travels, if you ever get to Pennsylvania, particularly the Harrisburg/Hershey area, please let me know. I would love to meet you face to face.

MERRY CHRISTMAS AND HAPPY NEW YEAR!

Mary Lou