12 Year Old Surgery in 2 weeks

[hmcc]

Hi LeighAnn,
Thanks for your message. I went today and bought soft pj's, pear juice, and ensure (we always have ice cream ) and am getting ready. I am thankful for the medical care we have here and looking forward to getting this behind us. I'm encouraged that you and your son were here in January and doing well already. I suspect what you said is exactly true--my daughter and I will share a special bond when this is all behind us.

I have a few questions:
Did you stay in the hospital the entire time? The way I feel right now is that I am not leaving there for anything. My mom is flying in and my husband is taking time off work, so we will have plenty of help/support.Is there anything you suggest I bring with me to the hospital? I bought 3 books, have a bible study I've been working on, and will bring the obvious essentials, but did you shower there and everything? At this point, I'm planning on it but am not sure how that looks. We live about 40 mins from the hospital, so it is not impossible for me to go home.

Also, was your son up for visitors? Several people have asked me if they can come see Claire. At this point, she says she wants visitors, so everyone is jumping on board. It's so sweet. I just don't want to have people come up there and be disappointed bc Claire isn't up to seeing anyone. We did start a carepages thingy last night so I think that will be a great way for Claire to keep everyone posted and get messages that are encouraging to her.

We have our pre-op appt tomorrow. I really like the dr and am looking forward to seeing the hospital and getting things moving forward. Thanks for your message and thoughts and prayers. Have a great night.

[ARodsMom]

Hi Heather,
My son had his surgery at Texas Children's Hospital a little over a year ago. Dr. Hanson performed his surgery. My husband and I both stayed with my son at the hospital the entire time we were there. My sister-in-law kept my younger two kids. During his surgery they called us every 2 hrs or so to update us on what was going on. I kept a journal and wrote down all the updates, just to give myself something to do. I also took a book and a few magazines but just skimmed them, I couldn't sit and read any of it. We took showers there in his room, and although I had called and asked family to bring shampoo when I realized I'd forgotten it the hospital provided some essentials for us. I just had to call the nurse's station and explain what I forgot and they had a sweet lady bring us a couple of much needed things. We live about 40-45 minutes away from there as well in the Spring area.

And my son had visitors the very next day. He stood by the bed the night of the surgery with the nurse holding him, and he was walking the next day. The hardest part was sitting down for him. Of course he had some pain just standing, but sitting in the chair the day after surgery was extremely uncomfortable for him. We also did the carepages to keep family updated. The day of surgery I didn't take our laptop but I would text my sister-in-law and she would update it for me, then when she came the next day she dropped it off to us. She brought my younger two to visit their big brother every day that he was in there. Yes, they turned him every 2 hrs which doesn't allow for much sleep. The moment we got home he was so relieved, he layed in his bed (upstairs) and said he just felt so much better being home. Good luck with everything, feel free to message me. If your daughter has any questions maybe she'd like to ask my son I'm sure he'd be willing to answer any questions for her. We will definitely pray for you guys. The day before the surgery was a bit difficult for me, but I held it together for him and kept busy. My niece and nephew came to spend the day with Alex to keep him busy, then my parents stayed the night so we could all ride in together.

[LSKOCH5]

Hi Heather, hope the pre op went well. I realize something I wrote wasn't clear - I meant that we were at the surgery stage ten wks ago, not there where you're having it. Sorry! Sounds as tho you're as ready as can be. I did stay in the hospital the entire time, except once I went to the hotel to try to catch up on sleep- that was a bust, but at least I got a great shower. There was a pull out chair bed, not bad, both in PICU & Peds. Shower in private room in peds. When hubby would show up in morning w my breakfast I'd go to a quiet part of hospital w beautiful view & decompress for a little while. Surprised how smoothly it all went.
I had books but rarely read; updated constant messages & we watched movies & shows. He had one visitor as we were far from home - Jacob fell asleep on him lol but he appreciated that he came. Lot of dozing on his part. I think you said no food for first few days, but family sent snickerdoodle cookie bouquet, which he munched on a lot (plus so much applesauce) as the foods they'd send for him were not appropriate. In peds he walked down to game room for an easy game of air hockey the 3rd & 4th days. You'll cringe the 1st time he goes to do things, but it's amazing how fast they progress.Oh- food- our Hosp provided meals for parents...best of luck to you - tomorrow is it? You'll be in our prayers.

[hmcc]

Hi Angie--
Thank you so much. Dr. Hanson will also be doing Claire's surgery, so you have no idea how happy I was to get your message. I have hit that point of having a hard time sleeping and for about the past two weeks, I have to try not to cry when I think about her surgery. My daughter thinks I am rock-solid, which makes me chuckle. If she only knew...

I am most dreading the waiting when she's in surgery--after she's out, it'll be hard to see her in pain, but I'll know she's ok. I will bring a journal--that is a great idea, and I'm sure I will be the same way--not be able to read my book. How long was your son's surgery? At our pre-op appt yesterday, the PA said expect 5 hrs, not 4. Maybe I'll plan on 6 and then I won't be anxious.

My mom is flying in today, so we'll have plenty of help with my other kids. I don't think my husband will sleep over, but it's good to know yours did so that's an option. I'm comfortable with Dr. Hanson--really like him--and hope he gives me updates every 2 hours as he did you. I actually saw someone yesterday checking out a hair dryer, which must be where you got the shampoo. Just you saying that will make me definitely remember it.

I really appreciate your message. It is just good to know you were at the same place we will be Friday. How is your son now? My daughter (Claire) isn't home from school yet, but I will be sure to mention your son to her. She is holding up like a champ. Yesterday at the appt, her one question she'd "really been wondering" is what the dr talks about during the surgery with everyone. Is it all about the surgery or do they chat about other stuff too? Funny how their minds work.

We also started a carepages website, that will help pass the time. I need to get some movies and will definitely remember my iPad. There's wiifii in the hospital, right?

Thank you so much for taking the time to message me. I'll keep you posted with our progress...

Heather

[ARodsMom]

I think it's totally normal to cry and want to take your child's place. I really wish I could have. I still tear up thinking of what a strong kid I have, just like all these other kids who face this and get through it. I told Alex there was a girl having the same surgery at the same hospital, I can't wait to tell him its with the same doctor (who I really really like). Alex calls him his hippy doctor, he said he looks like a hippy. Alex mentioned how they had their surgeries at the same age. My other son broke his wrist playing football and went to the orthopedic center where Dr. Hanson's brother is a doctor. Go figure, I would put a lot of money into one family. LOL!

Alex also had another smaller procedure right before Dr. Hanson's so his was a bit longer. He was in for a good 7 hrs or so, I can't remember off the top of my head. His face was very swollen after surgery, but he was under a lot longer. The nurse was great at calling, I have no doubt you'll get the calls as well. Just remember you want them to take their time so if you wait a little longer to get it done right then so be it. I know it's havoc on the nerves, but you want the absolute best job possible.

My son is back to being a normal kid. Kids bounce back so much faster from this surgery. His friends mom had the same surgery w/Dr. Hanson and she was amazed to see him walking around Walmart so soon, that's where we did our walking since his surgery was in december and it was cold outside. Dr. Hanson did say no trampolines and no football, he said he just doesn't like trampolines for any kid much less one he operates on.

We'll definitely be praying for you guys! Please keep me posted, I'm more than willing to go up there if you feel like you'd like the support.

[LSKOCH5]

Hi Heather - Know today is the day, praying for peace & strength for you & your family, guidance for surgeon & team, strength & a great correction and recovery for Claire. Hang in there, and please let us know how she is doing!
LeighAnn
(and Jacob was 6 hours)

[hmcc]

Hi Everyone--
It has been one week and one day since my 12 yr old's surgery. Thank you for your encouragement and prayers. This forum has made such a difference in this whole journey.

My daughter's surgery went very well and it is great to have it behind us. The anticipation of the surgery date and the waiting while she was in surgery was the hardest part. My daughter came home 5 days post-op. I'm not sure what's typical for now but this is where she is:
Needs help getting out of bed, walking
Uses restroom by herself (she's very modest!)
Showers while sitting in a chair--w help & bathing suit
Walks with help--today went .25 mile

My question is with pain meds. She seems to be doing great, and then hits a point when she has major pain. We are doing hydrocodone every 5 hrs (prescribed every 4 hrs), zofran (she has vomited twice since being home, which is excruciating, so I don't want to risk it happening again), Valium is prescribed every 6, but she will be at a "2" pain-wise, so I hate to give her meds when she's not really in pain. I'm finding it a balancing act between staying ahead of the pain and over-medicating. For moms out there whose child has been through surgery, when did you start weaning off pain meds?

LeighAnn, thanks for remembering us on Claire's surgery day. I looked for your before & after pics in the post-surgery thread but couldn't find them. I'm not the best at navigating this site, so if you can direct me, that would be such a help!

Thanks again, everyone!!

Heather
Daughter (Claire) fused from T4-L1
Tx Children's Hospital
March 23, 2012

[mabeckoff]

Glad to hear that she is doing well. Hope it continues.

[leahdragonfly]

Hi Heather,

Wonderful news that everything went so well. Isn't it great to be on the other side of surgery? The lead up I believe is near-fatal for us parents!

My daughter had a much smaller surgery than yours, but I hope I can give some helpful advice. I am also a nurse and have taken care of many post-operative patients in the last 20 yrs. At this stage, and especially since your daughter is still having major break-through pain, I would concentrate more on staying well ahead of the pain, and not worrying about over-medicating as long as she can be woken up. If the pain is a 2, that's good, you want it to stay low, but it will only go up from there, and once it goes up, it is so much harder to control. Also, once pain gets out of control it takes a lot more medication and time to get it under control. I would give her the valium around the clock on the schedule prescribed. They just massively rearranged her spine, and with it all the muscles and soft tissues have been stretched and moved. They are prone to painful spasm at this point, which the valium helps with.

If she is nauseated (which does not surprise me with hydrocodone, it makes me and my daughter both throw up), you may consider a call to the dr.'s office and ask to switch to oxycodone. Some kids handle this better (mine did), and it is a more effective pain medicine than hydrocodone, so less may be required. Again the zofran can/should be given around the clock on a schedule. I am a very barfy person when I have to take narcotics, and I found that zofran really didn't help me much. I had better luck with phenergan, which you could ask her doctor about.

If she is having break-through pain, I would go back to an every 4 hour schedule on the hydrocodone if it was prescribed that way. None of these pain meds last for 5 hours, so I am thinking it is just too long for her to go at this point. Keep her on an even keel and around the clock scheduling for another week or so, then you can try to lengthen out the meds a bit. She will NOT get addicted, and in another week or two you will be amazed at her progress.

Best of luck, it sounds like you are doing great. The hardest thing as a Mom I have ever done was send my precious baby into surgery. That part is now successfully behind you!

[Pooka1]

Hey Heather.

Great news! It sounds to me like she is doing very well!

I am trying to remember what happened with the meds. I remember asking whether we should taper by extending the time between doses or decreasing the dose given on time. I think what happened in both cases is they took the percoset on time until they ran out and then switched to extra strength tylenol. The percoset was the only med they were given.

For the first kid, it was dicey when we ran out of the percosets. The second kid was no problem. Identical twins with same fusion though different types of T curves. This is reason # 5,927 why twins studies in the medical literature are probably all wrong. :-)

Onward and upward.

[hmcc]

Thanks for the quick replies. Gayle, I had to smile at your "near-fatal for us parents" comment--so very true!! I needed some direction on continuing the pain meds on schedule and appreciate your advice. You are exactly right--once my daughter hits that break-through pain moment, she needs more meds & it seems to take forever (15 mins) to begin working. It is so hard on her & heart-breaking to watch & wait. I will keep up w the schedule--I feel good having a plan of action! Will let you know how it goes. Also, I have phenergan script as well. Changed over to that last night bc I was finding it wasn't working as well as before. Think I will call tomorrow & ask abt oxycodone. Thanks again!

Heather
Mom of Claire, age 12
Pre-surgery curves 50* upper, 40 lower
Diagnosed 4/2011 w 40*upper, 30* lower
Wore Boston brace 20-22 hrs/day 5/2011-2/2012
Fused T4-L1 on March 23, 2012

[LSKOCH5]

So sorry for delay - we were away for Spring Break in the Smokies (5 mi roundtrip hike to waterfall on his 3-mo surgy anniversary - crazy, huh?).
So glad Claire (and you!!) are on the other side Too late for this response, but stay on top of the pain during first few weeks - exactly every four hours, to stay on top of the pain, because it's just too hard to catch up w the pain once it takes the lead. We found out accidentally that the oxy worked worlds better for Jacob than the hydro - not just at relieving the pain, but also because he was absolutely stoned on the hydro. It was awful. I believe we started weaning down at 2.5 weeks, maybe 3. I insisted he ate something - even a handful of dry cereal - everytime he took a pill to avoid the nausea. And lots of applesauce & juice, as the pain meds constipate. Even Tylenol takes a toll on an empty stomach. It did get to the point where Jacob himself realized that moving - even if it were just to pace around the house if it was not a good time to get out & walk - was more effective than popping a pain pill.
Hope Claire is feeling much better by now. So glad it all went well.
ps - the pix should be in the "first time surgery", not kids' area, under before & after pix.

[Pooka1]

So sorry for delay - we were away for Spring Break in the Smokies (5 mi roundtrip hike to waterfall on his 3-mo surgy anniversary - crazy, huh?).

That's remarkable! I hope Mia sees this. Rather, I hope her mother sees this. And I hope her mother sees your son's radiographs. Those might change her mind about not wanting surgery.

[LSKOCH5]

That's remarkable! I hope Mia sees this. Rather, I hope her mother sees this. And I hope her mother sees your son's radiographs. Those might change her mind about not wanting surgery.

I'd pm'd Mia - didn't think about putting that in though. They're probably just scared of "BACK SURGERY!!" as most of us have grown up hearing bad back surgery stories. But scoli isn't the normal back operation - it's an amazing thing - to think of all the pain he was in before, to end up this awesomely well and with a beautiful back. It all seems like a miracle in hindsight. God bless all those medical pioneers who had crazy thoughts of "maybe I can straighten this spine out" ...

[Kat3573]

Wish I can have surgery but I'm stuck with a 53* y n a 36* l and stuck in a brace :/