Page 2 of 3 FirstFirst 123 LastLast
Results 16 to 30 of 36

Thread: Two weeks and counting... Jan 3rd for Jacob's surgery

  1. #16
    Join Date
    Oct 2011
    Location
    East Central FL
    Posts
    192

    2.5 hours in and counting down

    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

  2. #17
    Join Date
    Mar 2011
    Posts
    52
    How is recovery going? When will he be able to travel back to NE FL?

  3. #18
    Join Date
    Oct 2011
    Location
    East Central FL
    Posts
    192

    Update post-surgery, finally back on forum

    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.

  4. #19
    Join Date
    Oct 2011
    Location
    East Central FL
    Posts
    192

    One month out, doing great!

    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. Jacob spine Nov 2011.jpgnight before surgery photo.jpgbeforeafterspine.jpg2.5 wks postop.jpg
    Mom of 14yo son diagnosed Oct 2011
    Surgery 1/3/12 w Dr. Geof Cronen,
    Tampa General Hospital T3 to L1
    Jacob's pre surg curves: T58 & L31 12/28/11
    photos & xrays in "First-Time Surgery" thread "Before & After"

  5. #20
    Join Date
    Oct 2011
    Location
    East Central FL
    Posts
    192
    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!

    cubbeforeaftercroppedfinal.jpg His new xray, beside pre-surgery
    Last edited by LSKOCH5; 02-20-2012 at 10:20 AM. Reason: added before & after xrays
    Mom of 14yo son diagnosed Oct 2011
    Surgery 1/3/12 w Dr. Geof Cronen,
    Tampa General Hospital T3 to L1
    Jacob's pre surg curves: T58 & L31 12/28/11
    photos & xrays in "First-Time Surgery" thread "Before & After"

  6. #21
    Join Date
    Jun 2011
    Location
    Southern CA
    Posts
    2,224
    Glad that he is doing well, despite the setback
    Melissa

    Fused from C2 - sacrum 7/2011

    December 8, 2014 - Another Broken Rod Surgery

  7. #22
    Join Date
    Oct 2011
    Location
    East Central FL
    Posts
    192
    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.
    Mom of 14yo son diagnosed Oct 2011
    Surgery 1/3/12 w Dr. Geof Cronen,
    Tampa General Hospital T3 to L1
    Jacob's pre surg curves: T58 & L31 12/28/11
    photos & xrays in "First-Time Surgery" thread "Before & After"

  8. #23
    Join Date
    Jan 2008
    Location
    NC
    Posts
    8,903
    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.
    Sharon, mother of identical twin girls with scoliosis

    No island of sanity.

    Question: What do you call alternative medicine that works?
    Answer: Medicine


    "We are all African."

  9. #24
    Join Date
    Oct 2011
    Location
    East Central FL
    Posts
    192

    Back to school today

    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?
    Mom of 14yo son diagnosed Oct 2011
    Surgery 1/3/12 w Dr. Geof Cronen,
    Tampa General Hospital T3 to L1
    Jacob's pre surg curves: T58 & L31 12/28/11
    photos & xrays in "First-Time Surgery" thread "Before & After"

  10. #25
    Join Date
    Jun 2011
    Location
    Southern CA
    Posts
    2,224
    Glad to hear that Jacob is doing so well and is back at school.
    Melissa

    Fused from C2 - sacrum 7/2011

    December 8, 2014 - Another Broken Rod Surgery

  11. #26
    Join Date
    Oct 2011
    Location
    East Central FL
    Posts
    192

    10 weeks out - we realized we can't remember the last time he was in pain :)

    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!
    Mom of 14yo son diagnosed Oct 2011
    Surgery 1/3/12 w Dr. Geof Cronen,
    Tampa General Hospital T3 to L1
    Jacob's pre surg curves: T58 & L31 12/28/11
    photos & xrays in "First-Time Surgery" thread "Before & After"

  12. #27
    Join Date
    Jun 2011
    Location
    Southern CA
    Posts
    2,224
    So glad to hear that he is doing great and back into life
    Melissa

    Fused from C2 - sacrum 7/2011

    December 8, 2014 - Another Broken Rod Surgery

  13. #28
    Join Date
    Jun 2011
    Location
    Indiana
    Posts
    68
    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!
    Katie

    My blog: http://scoliosis-braceyourself.blogspot.com/
    My video: http://www.youtube.com/watch?v=8NG9hMohsU0

    5 Boston back braces
    Spinal fusion- Nov. 17, 2009, senior year of high school
    52 and 57 degrees pre-surgery, 22 and 20 degrees post-surgery
    Dr. Kim Hammerberg, Shriners Children's Hospital, Chicago
    Back into volleyball and music as a senior in college!

  14. #29
    Join Date
    Oct 2011
    Location
    East Central FL
    Posts
    192

    3rd month update

    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!
    Mom of 14yo son diagnosed Oct 2011
    Surgery 1/3/12 w Dr. Geof Cronen,
    Tampa General Hospital T3 to L1
    Jacob's pre surg curves: T58 & L31 12/28/11
    photos & xrays in "First-Time Surgery" thread "Before & After"

  15. #30
    Join Date
    Oct 2011
    Location
    East Central FL
    Posts
    192

    Should we be concerned w all the Xrays?

    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?
    Mom of 14yo son diagnosed Oct 2011
    Surgery 1/3/12 w Dr. Geof Cronen,
    Tampa General Hospital T3 to L1
    Jacob's pre surg curves: T58 & L31 12/28/11
    photos & xrays in "First-Time Surgery" thread "Before & After"

Tags for this Thread

Posting Permissions

  • You may not post new threads
  • You may not post replies
  • You may not post attachments
  • You may not edit your posts
  •