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View Full Version : Two weeks and counting... Jan 3rd for Jacob's surgery



LSKOCH5
12-19-2011, 08:35 PM
Feels as though we're on a bullet train - absolutely hurtling thru time towards Christmas then Jacob's Jan 3rd surgery. Have spent so many hours on this forum getting a crash course in scoliosis & surgery, reading what so many of you have gone through, what has helped, what to avoid - and I can't tell you how much I truly appreciate it all. Esp those of you who've taken the time to write me of your own children's scoli journeys, or those who've had surgery w Dr Cronen. Have had the blinders on, being focused on everything that needs to be done, so fortunately haven't gotten freaked out in quite a while; tho there's a constant prayer in quiet times, esp the middle of the night when I can't shut off my brain.
Jacob himself doesn't seem to want to talk about it much, but he's definitely on board; he knows the positive attitude, doing his exercises throughout the day, etc will help him get the best result. Doesn't ask many questions, but I believe he's ready to be done with the pain that he's had for so long. He's been very huggy, which makes my heart swell. I hope that part doesn't stop; my teenage boy comes to me for a long hug now many times a day.
I think we are as prepared as we can be - but any additional suggestions from y'all are appreciated - most especially your prayers & best wishes for the most positive outcome possible :) The memory foam topper came in last week, for his bed as well as for the 3hr ride home when released; raisins/applesauce/pb crackers; pear (&other types of) juice (wouldn't believe for a minute he'd drink prune juice...& they give meds to avoid constipation); pediasure; propel; button-down shirts & pull on pants, incl PJs. warm bathrobe even tho it's FL, slippers. Fenergin in IV. No morphine as bad reactions, use dilaudid(sp). I'm prepared to donate my o- blood next wk for his use, as Dr doesn't have his patients "wear themselves down before surgery" by giving their own - so agree! Homebound/hospital school set up to begin apprx 3 wks after. Fuzzy pillow. Surprise Christmas present he'll be able to use to watch movies, internet, etc. Have gotten a little weight on him - yeah! PT going well - building up rhomboids, etc - he's so determined & it helps his pain. Looks like so little, what else?

ps - is there a way to add a photo of his xray if it's not on flicker or photobucket?

mabeckoff
12-19-2011, 10:08 PM
Best of luck to you and Jacob. Hope all goes well

LSKOCH5
12-20-2011, 10:36 AM
Thanks Melissa, and best of luck to you on your continued recovery. Hope you're feeling better soon.
LeighAnn

mabeckoff
12-20-2011, 04:27 PM
Thanks Melissa, and best of luck to you on your continued recovery. Hope you're feeling better soon.
LeighAnn


Thanks LeighANn. I had a MRI today done on my right shoulder and I hope to hear soon from Dr Bederman

kennedy
12-20-2011, 04:41 PM
good luck with jacob's surgery on jan 3rd

Ballet Mom
12-20-2011, 08:06 PM
Looks like two surgeries on Jan. 3rd! Good luck for a fast and speedy recovery!

LSKOCH5
12-21-2011, 06:42 AM
Thanks very much!

LSKOCH5
12-21-2011, 06:47 AM
Kara - best of luck on your surgery on the 3rd! Hope it goes smoothly & that you have a speedy, thorough recovery! BendyBill is the 3rd in UK as well - it's going to be a positive, productive day.

LSKOCH5
12-27-2011, 10:52 AM
You think you prepare for everything, and then he coughs a rumbly cough and hubby takes him to the dr who says he's got "some bronchitis in there." Waiting for them to get home to find out all, but gp says it's day by day as far as if the surgery will take place on Tues. I want what is absolutely in his best interest, and he's got to be healthy going into this, so I can't see how it can go on. Any of you nurses out there have any comments?

leahdragonfly
12-27-2011, 04:11 PM
Hi there,

I am SO sorry to hear about Jacob's bronchitis---this seems to happen to a few kids on these forums every winter, and it is always stressful for the family. He may recover and be declared fit for surgery, or it may be postponed for his safety if it is not better. I would definitely call and notify the surgeon's office at this point (don't let them cancel it, he may be ok by then, just give them a heads up).

Until then, the best thing you can do is have him REST, drink plenty of fluid, and eat nutritious food. Tim will tell.

Good luck, please let us know how things shape up.

LindaRacine
12-27-2011, 05:23 PM
Hi...

If the GP thinks he might not be ready for surgery in a week, I agree that it's a good idea to call the surgeon's office. It's possible that they might be able to move some surgeries around so that you can swap dates to a week later if necessary.

--Linda

LSKOCH5
12-27-2011, 07:53 PM
Thanks Gayle & Linda. Went ahead and called the surgeon, his office said to keep the pre op & preregistration apps tmrw, as they believe he should be fine by then. If he isn't there might be a possibility they could on the 10th, but as the dr is heading to a conference 2 days later, but I don't have any comfort level w that. My husband feels ok, but to me I want surgeon in state the whole time he's in the hospital just in case, right?

LSKOCH5
12-28-2011, 07:51 PM
Had all pre op appts today. Lungs are clear & he's on 2nd day of zPac so all feel it's okay unless he gets worse for some reason. Rest, liquids & sunshine, where he thought he'd be tearing around til surgery. Good news as he now expects T3-L1. Curves have increased in the couple months since MRI; not a huge surprise as I swear he keeps shooting up in height. Surprised there are so few restrictions post surgery; guess that's a perk of being a young teen. Forgot to ask about raising arms, but based on other answers it's probably as it happens without pushing it. I'll still ask as I remember seeing that was a no no for a while for several.

leahdragonfly
12-29-2011, 09:34 AM
So glad to hear Jacob's lungs are clear. It sounds like you have the green light! These kids are just amazing in their recuperative powers.

Please keep us posted, and we will hold Jacob and your family in our thoughts.

LokanasDad
01-03-2012, 06:40 AM
Good luck and will be keeping you in our prayers.

LSKOCH5
01-03-2012, 09:24 AM
Thanks so much , esp for your pms on Lokan's recovery. It means a lot to be able to have a better idea of what to expect. Jacob was excited yesterday and has been so unbelievable calm. I lost it after he was wheeled away. Trust

LokanasDad
01-07-2012, 11:44 AM
How is recovery going? When will he be able to travel back to NE FL?

LSKOCH5
01-13-2012, 03:50 PM
It's been a busy, busy week & a half. Jacob's surgery was 6 hours long; when Dr Cronen came out he showed us the side by side xrays & his spine looked almost perfect to us. Ended up T3-L1, yeah! So much better than he led us to expect (he explained beforehand that it's more important to him to maintain flexibility), and he was also successful at correcting the lordosis. Was very relieved he didn't need to have blood transfusion as I hadn't been able to donate for him due to illness, but they did reuse his blood (can't remember the term). We were shocked when we saw him in recovery tho, as his pain was off the charts & the nurse there had no compassion nor empathy, was basically saying the pain is to be expected, deal with it. You expect incredible pain, but you also expect it to be managed somewhat; his was off the charts & he was begging to die. Thankfully when they got him into PICU he had phenomenal care & those nurses said their goal was to keep pain a 4 or under, which they did for the most part. I just can't stress how incredible the PICU team was at Tampa General. His pain was too much the first day to get him out of bed, & we had a tough night where they finally just started doing dilaudid overrides every couple hours & the oxy that next day & 2nd night. The 2nd morning they got him in the chair, that afternoon the same w a short walk w a walker. Great night's sleep 2nd night due to the oxy; bigger walk upon waking & OT started w different arm raises, then the afternoon walk was a long one all the way to regular pediatric room. Stairs the 3rd day, along w time in the game room w foosball, released on the 4th day, Sat. Each new "step" was scary for him (and us), but by the next time he'd do it, it was 2nd nature. Amazing how fast the kids blow through recovery. So many sweet moments throughout the hospital stay - I slept next to him on a chair-bed, we fell asleep holding hands most nights. And there's a neat new bond, for which I'm thankful. Only negative that day was the bowel issue - he would NOT drink prune juice up to that point, nothing had moved, & suddenly his abdomen was distended & painful. They were able to take care of that after several hours & since then he has not refused prune juice. Anyway, he was released on Sat, and bc of all forum posters who'd mentioned memory foam, I took it a step further & had placed 3" memory foam across & up the back seat of the truck. Jacob was able to sleep, and sit up & fidget around in relative comfort even w all the potholes, bumps, etc on the 3 hour ride home.
He's almost constantly moving to get comfortable & also to wear himself out to sleep at night. Has been out walking 2x day, reached 1 mile for each walk a few days ago but we scaled back a little as the pain got out of control 2 nights ago & we weren't able to get hold over it until this afternoon, after we switched to hydrocodone from oxycodone. The oxy seemed to affect his behavior, as tho he were wired & really loopy. The last day of decreasing the oxy made him very grumpy, and it was very painful; we're relieved the hydrocodone already seems to have less of an effect on him emotionally & yet has brought the pain fairly low. So not to minimize pain, but we are so thankful to be on the other side of the surgery, that recovery & correction have been so much better than we expected, but mostly I am so very grateful to all the forum "family" who have shared their stories, what has worked, problems that have arisen & how they were solved, etc. Really helps to know what to expect, and there's nowhere else I found so much info.

LSKOCH5
02-06-2012, 08:54 AM
So thankful we had the surgery & have moved on. Jacob feels so much better than he has in years; he never told us that he was in pain for more than a year, until it got so bad as to affect his normal teenage life. He still has some pain with his shoulder, but at 14 I'm thrilled that he has found that walking it out works for him in his situation instead of taking a pill. He is able to sit for longer periods of time & focus, so he is getting caught up on his schoolwork. I'm surprised quite often how much flexibility & movement he has. Followup appt is on 2/17; we'll see if he is released for school the following week. The thought of his being in a crowded middle school makes me uneasy, but I've read from so many of you parents about dr authorizing leaving class 5-10 min early each period & taking the elevator, so that would be a huge relief not to get jostled in the hallways. Anyway, am so grateful to all of you on this forum for sharing your experiences; through all of this I have found support, but esp when we watched him get wheeled away for surgery, I felt as though we had hundreds of people holding us up in support, between the forum & our church & families. And of course, faith. 1195119411961197

LSKOCH5
02-18-2012, 05:24 PM
Setback last week due to Jacob's heel growth plate becoming inflamed again. It's amazing how much his back eases when he walks, & boy when he couldn't get out for 4 days his back & shoulders became so tight & painful. Building up distance slowly again, so it's helping.
Had his 6-wk follow up yesterday & he did well w the 3 hr drive to Tampa Thurs as well as catching our first hockey game (Lightning beat San Jose). Appt went great, so amazed w his spine. These surgeons are just brilliant, to Have the talent to take an "S" spine, plus lordosis, & bring that spine into beautiful straightness. He's released for school Tues, w the limitations spelled out to avoid bustling hallways & stairs & avoiding carrying books. He's been goofing around quite a bit which freaks me out that he will hurt himself, but also that it will cause others to rough house w him. Starting PT as well as swimming. Also "proceeding w caution" back into drumming, as two of his classes are band (percussion). He's been playing the heck out of the piano for a few weeks. Anyway, such a relief to be so far down the recovery road. So thankful!

1225 His new xray, beside pre-surgery

mabeckoff
02-18-2012, 11:56 PM
Glad that he is doing well, despite the setback

LSKOCH5
02-20-2012, 09:23 AM
Thanks! I added xrays to last post. He's also starting PT today & is getting custom orthotics to lift the R leg 1.4 cm, to bring it to L's length, alleviating the difference in shoulder/hip & strain.

Pooka1
02-20-2012, 10:33 AM
That is a beautiful correction! It appears he was hypercorrected to <10* which drove the lumbar straight. Like my one kid who had a similar correction, I do not think they technically have scoliosis any more.

LSKOCH5
02-21-2012, 06:07 PM
Sharon, we are so absolutely thrilled w the results & that we're moving forward.
Jacob started back to school today, 7 wks to the day post surgery. He was happy to see his friends, but esp when he walked into the band room & 100 or so kids yelled "Jacob's here" & a few girls shouted they loved him (?). So happy to see him back to near normal. Admittedly, walking him in & letting go took me right back to the first day of preschool... you know that feeling of wanting to keep looking in the windows to see how he's doing, entrusting others w your baby?

mabeckoff
02-21-2012, 06:49 PM
Glad to hear that Jacob is doing so well and is back at school.

LSKOCH5
03-15-2012, 12:31 PM
So thankful to be able to say that Jacob is doing phenomenal. Realized last week how well he was moving, etc; he told me he can't remember the last time he was in pain! Still doing PT twice a week, & doing exercises at home daily as well as walking 1-2 miles/day. He's fully participated in band for several weeks now & was chosen for All County Band. Playing the heck out of piano & drumming up a storm, starting to run around w his friends (w warnings not to horse around!!); I'd say he's about normal. So happy! Thanks to everyone here who made a difference in our journey!

mabeckoff
03-15-2012, 12:50 PM
So glad to hear that he is doing great and back into life

braceyourself
03-18-2012, 09:10 PM
I'm so glad to hear that he's doing so well! I actually have been thinking about him recently. And congrats for making All County Band!! : ) Hope he's continually doing better!

LSKOCH5
04-10-2012, 10:58 AM
Hey Katie - hope you're doing great and having a wonderful schoolyear! Still doing volleyball?
3 Months post surgery & it's going great most of the time. So very thrilled w the outcome & it just seems like a miracle for which we're thankful daily! Celebrated Jacob's 3rd mo "new back" anniversary w a 5-mi round trip hike to Abram's Falls in Cades Cove, in the Smokies. He led the way most of the time - crazy pace, even though there are 3 crests each way! He was exhausted afterwards & we had a laid-back day after, with strolls by river & creeks, & a little rock hopping. We split up the 10hr drive to the mtns on the way up, which worked well, but I goofed not bringing memory foam for the drive. Moving around often is still so important; he rather "locks up" the longer he sits. No Tylenol at all, he's still doing PT 2x week w home exercises & walking on weekends. Followup appt this Fri w Dr. Cronen. Jacob wants to ask him if he can play football - we say HECK NO!, I don't even want him catching a football, not even just tossing it!, & he wants to know if he can strap on drums for marching band for next month - a snare would be the lightest, but that's a hard arch over both shoulders. We knew we'd deal w marching band in August when he starts high school - but never thought it would arise this early. Other than that, it's all great. Thanks again to everyone for their info & support - it meant so much through the whole process!

LSKOCH5
04-10-2012, 11:18 AM
As we approach another post-surgery followup, have to ask because I always am concerned about the radiation exposure w all the xrays that are taken - what are we risking w all the pre & post xrays? I know one of my daughter's specialists had said to avoid CAT scans, & at the dentists we use thyroid protectors w the xrays, but...
Your thoughts & experience?

LSKOCH5
08-11-2012, 02:13 PM
Wanted to update this in case anyone is reading through this part of the forum to prepare for an upcoming teen surgery. We had Jacob's 6-month followup a few weeks ago; everything went great & he was cleared to do even more. Just has a few restrictions - no trampoline, bungee, rollercoaster, & the doctor wasn't too keen on jetskiing. Was happy that Jacob has been ocean kayaking, paddle boarding, even surfing on the longboard - the paddling is apparently a great exercise for him.

Every day I am so unbelievably thankful for this surgery & for a wonderful outcome. Don't want to come off as though I'm bragging - it's more that it astounds me where we were just literally months ago, from pain & diagnosis, to surgery, to doing 4-5 miles hikes in mountains at 3 mos (Smokies) & 6 mos (Rockies), to the big goal, which was all about band camp. Last Oct when Jacob was diagnosed w scoliosis & would absolutely need surgery, we moved very swiftly in researching doctors & hospitals, as we knew our son's passion for marching band was all-important to him & that practices start in July. Am absolutely thrilled to say that goal was successfully accomplished - Jacob gradually increased the amount of time he'd wear snare & base drum. Jacob just this morning finished 1.5 wk (8 hrs daily!) marching band camp, w very little discomfort. He was approved by Dr. Cronen for snare, but all the seniors got them; 1st bass drum is about the same weight, & he's a great drummer, so they put him on that, in essence leading 1/3 of percussion. Starts high school Thurs. He is so happy with his life & I am amazed. Period. It's just such an incredible journey from the heartache & disbelief at the diagnosis & surgery, to this outcome, just 7 months since then. So grateful.

Pooka1
08-11-2012, 02:28 PM
Nice report!

T fusions in kids (and adults) appear to have been largely solved as far as anyone knows. This is what folks can expect of this surgery. These surgeons are amazing in giving kids back their life.

JenniferG
08-11-2012, 04:50 PM
So happy for you and Jacob. I think I have an inkling of the joy and relief you are feeling. May Jacob's life be free of concerns about his back.

LSKOCH5
08-11-2012, 05:06 PM
Nice report!
These surgeons are amazing in giving kids back their life.
AMEN! and thanks for all the support through it all!
LeighAnn

LSKOCH5
08-11-2012, 05:06 PM
So happy for you and Jacob. I think I have an inkling of the joy and relief you are feeling. May Jacob's life be free of concerns about his back.

Thank you Jennifer :)

mabeckoff
08-11-2012, 07:32 PM
Glad that he is doing so well