Page 1 of 5 123 ... LastLast
Results 1 to 15 of 65

Thread: Alex is Home!!

  1. #1
    Join Date
    Mar 2005
    Location
    Butte, Montana
    Posts
    114

    Alex is Home!!

    HI everyone!

    Just a short note, as I am exhausted! Alex's surgery was on Monday, March 27, and we are home already. Fourteen vertebrae fused, and Alex was amazing! Nikki said he would be my superman, and he was!

    More later!

    Lura

  2. #2
    Join Date
    Jan 2005
    Location
    Northeastern Oregon
    Posts
    515
    Lura,
    I am so glad you and Alex are home. I knew he would do well. He had to because he has a pretty terriffic mom. You will still be tired for a while. It's almost like taking care of a baby again, but it is short term.

    Crystal is doing really well. She is going back to school Monday. One day shy of being three weeks post-op. I can't believe it. She is on very little pain medication. She says her back doesn't hurt all the time, like it did before surgery. The pain she has now is from the incision. She complains now that her incision itches.

    I am so thrilled that Alex was your superman. The kids are so strong, it is incredible what they are capable of going through. It is so nice to have you on the other side now.

    I have looked continuously this week for a thread from you. I was thrilled when I saw it tonight. What did you think about the care Alex got a Shriners? I can't imagine taking my child any where else for this type of surgery.

    Welcome Home. I will continue to keep you in my prayers. And, yes, I would like to exchange addresses with you. I'll e-mail mine to you when I get a minute.

    Love and prayers,

    'til Later,
    Nikki

  3. #3
    Join Date
    Feb 2004
    Location
    New Zealand
    Posts
    108
    Congratulations. So happy for you and Alex, and of course, for those of us anticipating our child's surgery every success story helps to ease the anxiety a little. Thanks for taking the time to post when you must be very busy.

    Give Alex very best wishes from Hobbit-land.
    Patricia
    Scoli Mum from New Zealand
    Daughter Caitlin's surgery 2nd May 2005
    Posterior fusion T3 - L1

  4. #4
    Join Date
    Apr 2004
    Location
    Morpeth, Northumberland
    Posts
    194
    Hi Lura

    I am so happy that everything went so well for you two - though I'm sure exhausted is an understatement!
    Big hugs to you and gentle ones for Alex.
    Luv
    Lorrie

  5. #5
    Join Date
    Sep 2004
    Location
    Baltimore, MD
    Posts
    401
    Hi Lura,

    Just checking to see how you're doing now that you're home. Sometimes it's tough being away from the doctors and nurses and on your own. I hope you're coping well and your little man is hanging in there. Drop us a note if you get a chance!
    Susanna
    ~~~~~~
    Mother of a 17 year old daughter. Her "S" curve was 40 degree thoracic from T3 to T9, and a 70 degree rotatory thorcolumbar from T9 to L4. She was operated on March 9th, 2005 by Dr. Boachie-Adjei at the Hospital for Special Surgery in NYC. She was fused from T11 to L3, using an anterior approach, and the major curve corrected to 20 degrees. She's doing great!

  6. #6
    Join Date
    Mar 2005
    Location
    Butte, Montana
    Posts
    114
    Hello Girls!

    I have never been so tired in my whole life!!! Stress and lack of sleep will do that to you! Alex amazes me more every day. Today he seems to be bothered by the incision, needs pain meds every 5-6 hours, isn't sleeping enough for me to get a good nap, but it returning to his sweet self very rapidly!

    As for Shriners, it started out rough, we sat in Alex's room for 2 hours before I threw a fit and questioned why no one had been in to put him at ease (or me for that matter). Following my breakdown, everyone was extreemly gracious. The doctor was a pompous ass the morning of surgery when I had questions, and I told him I wouldn't be a good mom if I didn't research and ask questions. The days past surgery I feel he developed a respect for me, and I saw him in a different light as well. The nurses were the best I have ever experienced, and Alex's surgery was amazing (10 degree curves at present)! They had Alex up and moving on Tuesday, and he just moved more every day! By Friday, all tubes were gone and we were chomping at the bit to head home! The ride home was harry for the first half hour with him trying to get comfortable, then he slept the remaining 4 hours.

    To any mom's still waiting for surgery, it truly isn't as bad as you are expecting, and trust me, I was expecting the very worst.

    Well, it's time for me to give Alex some meds and hopefully sleep for a few hours. For anyone who wants it, my e-mail is llcass@in-tch.com. Thank you all for the prayers and good wishes, they helped!

    More soon!

    Lura

  7. #7
    Join Date
    Sep 2004
    Location
    Baltimore, MD
    Posts
    401
    I totally understand. Three weeks post-op my little one is still waking up every 4-5 hours for pain meds. I can tell you, I felt like a new mom with a nursing baby, and it sure convinced me I am WAY too old for another baby. She is getting a little better every day. I just gave her meds, so off to bed for me too. Up again at 6:00 AM, phew!

    Susanna

  8. #8
    Join Date
    Jan 2005
    Location
    Northeastern Oregon
    Posts
    515
    Lura,
    Good to hear from you again. I am glad you got assertive with people. Sometimes you need to do that. I think it must of been much harder when you didn't get to see the doctor until the morning of surgery. We met with him the afternoon before surgery and had all evening and a few hours the next morning to cogitate about what was said.

    Sometimes they forget we are moms and the only reason we are in those situations is because our children need the very best care possible.

    It sounds like your trip home was much like ours. Took a little while to find that comfortable spot, then the rest was breeze, or should I say a "SNOOZE".

    Isn't it incredible about all the worrying we did before surgery, and them BAM its done and we wondered what we were all worked up about. I felt the same way.

    You get some much needed rest. Take some advice another mom on the boards gave me. Don't worry about the laundry, dishes, etc. They will get done when you get them done. You need your rest while Alex is resting. I know we feel like the laundry is going to grow legs and attack us, but it won't. I promise. If there is anything wet, it might get a little smelly, but it won't sprout legs. Maybe it should, that might be easier yet. lol!

    Again, glad you guys are home and settling in. He'll be driving you nuts again before you know it. I am so glad Crystal is going to school tomorrow. It's been too long to have her home. She was home for three weeks before surgery because her whole school was sick and I didn't want her sick. She's going nuts and wants to get back to school.

    Love and prayers to you, Alex, and the rest of your supportive family.

    'til later,
    Nikki

  9. #9
    Join Date
    Oct 2003
    Location
    Utah
    Posts
    1,010
    Lura - I'm glad to hear Alex is home and recovering there. It sounds like he was the ideal patient in the hospital. Good for him and you! Needing pain meds every 5-6 hours is not unusual. Keep giving it to him whether he needs it or not for a few more days. It's easier to keep on top of the pain, than let it get bad and then try to control it.

    Keep up the great work. You will be just fine. Alex will too. Keep us posted.
    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/

  10. #10
    Join Date
    Apr 2004
    Location
    Morpeth, Northumberland
    Posts
    194
    Hi Lura
    Gald things went so well in the hospital (even if it did take your throwing a wobbler at them) - I knew you'ld turn out to be a top grade tea-bag!1
    Nikki's right - forget the housework. If anyone complains - give them a job to do. Right now all you have to do (all?!) is look after the two of you.
    Love
    Lorrie

  11. #11
    Join Date
    Jan 2005
    Location
    Washington State
    Posts
    43
    I am SO very happy that all went well and that you guys are home! I have been waiting to see an update like this!!! Many hugs to you and Alex!
    SARAH ~Mother of 3~ 11 year old son had a Posterior Spinal Fusion on March 17, 2005. He had a 77*, right thoracic curve, and was fused T4-L1. His curve is now less than 10 degrees* He is doing great!

  12. #12
    Join Date
    Jan 2005
    Location
    Northeastern Oregon
    Posts
    515
    Lura,
    How's your superman (Alex) doing? Good I hope. Crystal is finding school is kind of wearing her out.

    Just thought I'd check on you guys.

    Still sending lots of prayers your way.

    'til later,
    Nikki

  13. #13
    Join Date
    Mar 2005
    Location
    Butte, Montana
    Posts
    114
    Lorrie, Sarah, and Nikki,

    I love getting on this site and seeing notes from all of you!

    I have been a single mom to Alex since he was 8 months old, so I am here to tell you, if I need to get tough, I do (granted there are usually tears involved, mine)! I think I've said it before, but I have fought for 5 years to keep Alex fully included in classrooms with his non-disabled peers, and to date I have been successful every year! So thanks for calling me a top grade tea bag, Lorrie!

    Sarah, I've tried to imagine how Trenton is doing since he and Alex are close in age and had surgery close together. I am also curious about Nicole. Alex is doing so well. He is refusing the pain meds. which is freaking me out, but he will take reg. children's tylenol, so I guess he knows best. We are experiencing some tummy trouble and his appetite still isn't great, but he is moving around and remains his happy, silly self, so I am not panicking.

    Nikki, we are all referring to Alex as "superman" now! My dad was in Spokane with me and when they brought Alex down from recovery, he was doing rather well and my dad tearred up and said "that kid is my hero", this brought me to tears as well. I have to say I have one tough kid! I hope Crystal isn't trying full days, I don't think they realize what surgery takes out of you. I'm hoping to get Alex doing half days by May 01.

    My very best to all of you as well as Trenton, Crystal, and Genevieve and your families!

    Lura

  14. #14
    Join Date
    Jan 2005
    Location
    Northeastern Oregon
    Posts
    515
    Lura,
    I am so glad to hear from you. I am glad Alex is doing so well. These kids are all superheros.

    Crystal did 5 out of 7 classes Monday and is still pretty tired today.

    Can you do me a favor and make a post on the Surgery site - Please Post Your Shriners Experience. I think there are people out there that would like to know and there are so many Shriners hospitals, it would be nice to see if there is consistency in care from Shriner hospital to Shriner hospital. Do this only if you have time, I know how exhausted you are and this isn't that important.

    I think it is so incredible how these kids all get through their surgeries. They are all so strong and getting past some major hurdles. I also think all of you moms that deal with other disabilities and go through this with your kids are supermoms. You all step up to the plate and become the best advocate your child has. You ladies are all wonderful and are doing a great job.

    Our prayers to out to all of you and your children and families.

    'til later,
    Nikki

  15. #15
    Join Date
    Apr 2004
    Location
    Morpeth, Northumberland
    Posts
    194
    Hi Lura
    I can't believe how fast your Alex is coming on - he's a real tough little cookie, isn't he! I would reckon as long as he's happy he can't be having too much pain. The only trouble with children's meds is the volume they have to take as they get older to get a decent dose. We only last year (at age 16) manage to wean Genevieve off paediatric Calpol. You have to take about a gallon to get an adult dose. We now grind up regular tablets as needed and hide them in jam. I knew that mortar and pestle I never did grind spices in would come in handy one day.
    She broke her arm last year and school was quite surprised when she came back complete with the mortar & pestle and a jar of raspberry jam!

    Nikki
    Crystal sounds to be doing just brilliantly - I'm amazed she's back at school already. Really happy for you all.

    Lorrie

Posting Permissions

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