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Thread: Son having fusion on Thursday 4/2

  1. #1
    Join Date
    Mar 2009
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    10

    Son having fusion on Thursday 4/2

    Hi
    My 15 year old son, John is having spinal fusion from T4-T12 with thoracoplasty. I am starting to stress myself out. I have not gotten him slippers and a robe (which were on the list from the hospital). I don't know what he really needs and dosen't.

    We live in Iowa and his surgery is taking place at Gillette Children's Hospital in St. Paul Mn. He is a patient of Shriner's, but his surgeon prefers to do this procedure at Gillette. So, my disabled hubby is going to be staying at the PAC (parent accommodation center) at Shriner's and I will be staying with John at Gillette. I will have to drive back and forth between the two hospitals to transport my hubby.

    I am worried about the car ride home...about 250 miles. Any tips or tricks to make this more comfortable for John would greatly be appreciated. I would appreciate any advice at all. John goes to school tomorrow and then is done for the year. He will have a homebound tutor when he is up for that.

    Well, I am rambling, but like I said I am a stressed out wreck. Any words of advice?

    Thanks for listening!
    Sherry

  2. #2
    Join Date
    Oct 2003
    Location
    Utah
    Posts
    1,010
    Big hugs to you, Sherry. You have double the responsibility - hubby and John. Best wishes with them both. I wish you had someone (at least a few days) to help with hubby.

    NON-SKID slippers are very important. If you don't bring anything else to the hospital, I'd bring non-skid slippers. When they get him up to walk, he will need as sturdy feet as possible. The hospital slippers have rubber bumps on them, and sometimes that works. Other times, patients don't like them because the bumps hurt their feet. Good footwear is vital, IMHO. The rob, not so important. If the hospital wants you to have one, AFTER you get there (and if they ask) tell them he doesn't have one. Period. They will likely give him another hospital gown to wear backwards (open in the front) as a rob. Not a big deal.

    Also, see if you can talk to the Pain Services people BEFORE Thursday about what their plan is to keep him comfortable. Knowing ahead of time will hopefully prevent any breakthrough pain (which is AWFUL to play catchup with). Also, find out how they plan to keep his bowels "moving". Constipation can delay a good recovery - potentially painful.

    I understand having the surgery at the Children's Hospital rather than Shriners. The nursing care will likely be more experienced in helping him at Gillette.

    For the car ride home, tell the hospital you have a long road trip ahead. Make sure they help dose him up with good drugs before you leave, then have some on hand for during the trip. Stopping every hour may be necessary to stretch his legs (even if he doesn't stand up) and re-position himself. LOTS OF PILLOWS should help too.

    We'll be sending our best your way. May the entire experience go smoothly for you, and for hubby, and for John.
    Carmell
    mom to Kara, idiopathic scoliosis, Blake 19, GERD and Braydon 14, VACTERL, GERD, DGE, VEPTR #137, thoracic insufficiency, rib anomalies, congenital scoliosis, missing coccyx, fatty filum/TC, anal stenosis, horseshoe kidney, dbl ureter in left kidney, ureterocele, kidney reflux, neurogenic bladder, bilateral hip dysplasia, right leg/foot dyplasia, tibial torsion, clubfoot with 8 toes, pes cavus, single umblilical artery, etc. http://carmellb-ivil.tripod.com/myfamily/

  3. #3
    Join Date
    Oct 2007
    Location
    Indiana
    Posts
    1,978
    I'll be praying for your son and your whole situation. Every hospital is different, but I'll go ahead and mention how it was with me about some of your concerns.

    When I had my surgery, I had about a 2+ hour drive home, so not nearly as long as yours. I was told we needed to stop half way and have me walk a little, to help prevent blood clots. Take plenty of pillows.

    I took a robe and slippers to the hospital because they were on the list and never used either. They always just put another gown on me backwards, as Carmell mentioned. And I walked with the socks with rubber designs on the bottom that were hospital issue. I think you'll probably be fine. I'll be looking forward to hearing about how it all went, when John is on "the other side" of the surgery. Big hugs, Susie
    67 and plugging along...
    2007 52 w/ severe lumbar stenosis & L2L3 lateral listhesis (side shift)
    5/4/07 posterior spinal fusion T2-L4 w/ laminectomies and osteotomies @L2L3, L3L4
    Dr. Kim Hammerberg, Rush Univ. Medical Center in Chicago

    Corrected to 15
    CMT (type 2) DX in 2014, progressing
    NEW 10/2018 x-rays show spondylolisthesis at L4/L5 - Dr. DeWald is monitoring

    Click to view my pics: pics of scoli x-rays digital x-rays, and pics of me

  4. #4
    Join Date
    Jan 2006
    Location
    PA
    Posts
    778
    Sherry,

    You've been given excellent advice.

    When my daughter had her surgery, within a few days time, she was wearing her own clothes--pj or lounge pants and a t-shirt. And if John isn't feeling up to getting dressed, do like the others have suggested--wear two gowns.

    Since John is a patient of Shriner's, is there any way one of their volunteers could transport your husband to the hospital for you?

    While taking care of hubby and John, please remember to take care of yourself. Drink plenty of water, eat, and sleep whenever John sleeps. I'd also suggest taking a note pad and writing down John's meds. What he was given, what it was for, what time it was given and when he can have the next dose. It is very important that the pain doesn't get ahead of you. This is extremely important once he is on oral pain meds.

    Hang in there. The surgery will be over before you know it!

    Mary Lou
    Last edited by Snoopy; 04-03-2009 at 05:55 AM.
    Mom to Jamie age 21-diagnosed at age 12-spinal fusion 12/7/2004-fused from T3-L2; and Tracy age 19, mild Scoliosis-diagnosed at age 18.

  5. #5
    Join Date
    Mar 2009
    Posts
    10
    thank you all for your responses. I am calmed down some. I will get the slippers, and skip the robe. Money is getting tight. I might asked about a volunteer taking Joe to the hospital. I really hate asking for help. I will get a notebook and document everything. Thanks for the tip. I would never think of these things myself.

    The surgeon called tonight and wanted to know if I would consent to using discarded ligaments from John's back for some research he is doing. He is comparing the ligaments in Scoliosis patients to those with other back issues. I consented to this, he said it would not hurt any more or extend the surgery.

    Tomorrow, I pick up John from school and we clean out his locker. He will start homebound tutor on April 14, if everything goes as planned. His school year is over in mid May and is high school is extremely overcrowded, so he is not going back this year.

    ok, I am back to rambling...I think I will make a list of stuff I should take north. Thanks again everyone.

    I hope you and your loved ones all stay safe

    Sherry

  6. #6
    Join Date
    Jan 2007
    Location
    Ontario, Canada
    Posts
    140
    Sherry
    I got my son crocs for the hospital and they were fabulous, easy to put on/take off and very stable. He practically lived in them for the first few weeks. We also skipped the robe. Pillows for the ride home a big must. Mary Lou's idea of a notepad/diary good idea too. I wrote in funny things that Patrick said to me during his stay (drug induced I am sure) and makes for a nice keepsake after the fact.
    You/John will be on the other side before you know it. We'll be thinking of you

    Ramona
    mom of Patrick, age 15 at time of surgery
    diagnosed July 2006 curves T58 L 38

    Nov. 2006 curves T72 L38
    also lordoscoliosis

    feb.2007 curves T79 L43

    Surgery May 16 2007
    fused T4 to L1

  7. #7
    Join Date
    Oct 2006
    Posts
    132
    Hugs to you!!! I know you are going nuts (and probably either already in the hospital if they are having you go the night before or on your way!).

    We bought a robe & never used it either.

    Hang in there, soon you will be on the other side for recovery and I find that a lot less stressful.
    Becky
    Mom to DD (15) with S 48*+ curve
    Had her surgery March 9, 2009

  8. #8
    Join Date
    Mar 2009
    Posts
    10
    He is on his 3rd hour of surgery right now. It was scheduled for noon but did start until 2:00....the waiting is terrible

  9. #9
    Join Date
    Apr 2007
    Location
    Seattle, WA
    Posts
    385
    I hope the surgery goes very well. Your wait and a lot of the tension will soon be (mostly/somewhat) over! I wanted to mention that when Alexander was in the hospital, I had a little notebook in which I wrote everything down - Dr.'s, nurses, meds, times related to surgery and meds, any issue that came up that I wanted to make sure to remember and/or ask about; I kept writing throughout the hospital stay and then used it to help myself remember med doses and times after he was home. Alexander still likes to look at it.

    I wish your son quick recovery after all he's been through.

    Take care,
    Laurie

    Mother of Alexander & Zachary:
    Alex is 16 years old and in the 11th grade. He has congenital scoliosis due to a hemivertebrae at T10. Wore a TLSO brace for 3 1/2 years. Pre-op curves were T45 & L65; curves post-op are approx. T31 & L34. Had a posterior spinal fusion from T8 to L3 on 7/12/07 at age 12. Doing great now in so many ways, but still working on improving posture.
    Zach is 13 years old and very energetic.

  10. #10
    Join Date
    Jan 2009
    Location
    U.S.A.
    Posts
    21
    My daughter had surgery last year and we had a rough first three days in the hospital. Pain control was the problem. Not sure what went wrong but it was unpleasant. I wish you all the best in this stressful time. We had a two hour drive home but I had to stop for meds and a toilet seat...I was a wreck after four days of no sleep but I made sure that I did not mess up her meds schedule and she did good. She was pretty out of it but was glad to be going home and out of the hospital. They told me that I would probably have to pull over and get her out of the truck on the way home. She did not complain so I kept right on driving!

  11. #11
    Join Date
    Oct 2006
    Posts
    132
    HUGS Sherry!!!!

    I know it's tough waiting!!! Did they start the actual surgery at 2:00 or all the pre-op stuff?

    Carolyn went in at 7:30ish AM but they didn't make the first incision until 9 or 9:30 AM.

    Hang in there!
    Becky
    Mom to DD (15) with S 48*+ curve
    Had her surgery March 9, 2009

  12. #12
    Join Date
    Nov 2007
    Location
    Illinois
    Posts
    10
    I know now you are probobly in ICU but I admit the hospital stay isn't fun but you'll all pull through it just hang in there best wishes!
    Sugery: Wednesday, June 27, 2007
    Fused: T3-L4
    Hospital: St. Louis Childrens Hospital

  13. #13
    Join Date
    Oct 2008
    Location
    Sunshine Coast, Queensland, Australia
    Posts
    3,263
    This is the hard time for you but this day will soon be over and soon your boy will be on his way to recovery. You have much on your plate right now, so I hope you get good news very soon.

    Jen
    Surgery March 3, 2009 at almost 58, now 63.
    Dr. Askin, Brisbane, Australia
    T4-Pelvis, Posterior only
    Osteotomies and Laminectomies
    Was 68 degrees, now 22 and pain free

  14. #14
    Join Date
    Mar 2009
    Posts
    10
    John is in PICU. The surgery started at 2:30 and ended about 7. He got to PICU at around 10 pm. What a long day. They tried to make him stand around 1030 this am to mold his brace...imagine that he couldn't tolerate the pain. I tried to tell them that but I am just a mom and don't know anything. Now they have to wait until Monday to mold the brace. I know they want him mobile, but 12 hours after he gets out of recovery is pushing it too much.

    He had basically slept since they tried to stand him. Wore him out completely. Doc is suppose to come in between 3 and 4, so we will see what he says

    Sherry

  15. #15
    Join Date
    Jan 2006
    Location
    PA
    Posts
    778
    Quote Originally Posted by SherryM View Post
    What a long day. They tried to make him stand around 1030 this am to mold his brace...imagine that he couldn't tolerate the pain. I tried to tell them that but I am just a mom and don't know anything. Sherry

    Welcome to the other side! The waiting is always hard, but it is behind you now.

    Why would anyone try to mold him for a brace within 12 hours or so after leaving recovery? That's so dumb! I'm glad you tried to speak up. Keep speaking up whenever you feel the need. You are the MOM and you know your son best. Don't worry about hurting anyone's feelings. Your job is to look out for your son and do what you feel is best for him.

    Remember to take care of yourself.

    Mary Lou
    Mom to Jamie age 21-diagnosed at age 12-spinal fusion 12/7/2004-fused from T3-L2; and Tracy age 19, mild Scoliosis-diagnosed at age 18.

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