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Thread: Vent Free and Extubated

  1. #1
    Join Date
    Jan 2007
    Posts
    65

    Smile Vent Free and Extubated

    Hi all,

    Started a new thread because I got tired of that darned frowny face. It no longer fits. The smiley is all I want to see from now on.

    As an update, Spencer has been on spontaneous breathing all day and was just extubated. For kids like Spencer, the vent is a very scary thing because it is so hard for them to come off. But he did it!!! and we are now that much closer to recovery.

    Robert
    Spencer's Dad

    11 year old boy with PMD Luekodystrophy
    Nonambulatory, nonverbal, nonweight bearing
    VRO and Pemberton hip reconstruction at age 5
    Nissen fundo at at age 7
    Subdermal spinal drug pump at age 9
    Complete Spinal Fusion Jan. 9, 2007 at age 10.
    118 degree curve before surgery - less than 25 after!!

  2. #2
    Join Date
    Oct 2003
    Location
    Utah
    Posts
    1,010
    woo-hoo! Party time. So happy to hear he was abel to be extubated. Many thoughts and prayers that he stays vent-free and continues a smooth and uneventful recovery.
    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
    Aug 2004
    Location
    ny
    Posts
    1,809
    That's great news!! I'm thrilled for you that things went so well.
    mariaf305@yahoo.com
    Mom to David, age 17, braced June 2000 to March 2004
    Vertebral Body Stapling 3/10/04 for 40 degree curve (currently mid 20's)

    https://www.facebook.com/groups/ScoliosisTethering/

    http://pediatricspinefoundation.org/

  4. #4
    Join Date
    Jan 2006
    Location
    near Philadelphia
    Posts
    1,260
    Robert, I just looked at your blog and I'm so happy that Spencer came through the surgery so well. You have a lovely family -- God bless you!

    Chris
    Chris
    A/P fusion on June 19, 2007 at age 52; T10-L5
    Pre-op thoracolumbar curve: 70 degrees
    Post-op curve: 12 degrees
    Dr. Boachie-adjei, HSS, New York

  5. #5
    Join Date
    Jan 2006
    Location
    Tasmania
    Posts
    259

    Smile

    Fantastic, honestly the wonder of children, they are so resiluent(if thats how its spelt)

    Much love to you all
    Macky
    Operation 1966, Fused from T4 to L3, had Harrington rods inserted. Originally had an 85 degree Thoracic curve with lumbar scoliosis as well but had a good correction.
    Perfectly normal life till 1997 but now in a lot of pain daily. Consider myself very fortunate though.

  6. #6
    Join Date
    Jan 2007
    Posts
    65

    Update

    Just wanted to update you all. Spencer has had a good recovery. He is only on half doses of lortab now and seems to be handling the pain very well. He is more annoyed at being in the hospital. When he wakes he looks around and then starts to cry. This is good. The crying helps clear his lungs (still junky from extubation) and his reaction means he is coming back to normal. We are transferring to Shriners today to finish his recovery there. Hopefully we will be home by Friday.

    Robert
    Spencer's Dad

    11 year old boy with PMD Luekodystrophy
    Nonambulatory, nonverbal, nonweight bearing
    VRO and Pemberton hip reconstruction at age 5
    Nissen fundo at at age 7
    Subdermal spinal drug pump at age 9
    Complete Spinal Fusion Jan. 9, 2007 at age 10.
    118 degree curve before surgery - less than 25 after!!

  7. #7
    Join Date
    Dec 2005
    Location
    new jersey
    Posts
    850
    thats great news, Robert! I wish Spencer all the best & lots of hugs!!! --Ly

  8. #8
    Join Date
    Jan 2007
    Posts
    65

    Aaarrrggghhh!!!

    Well, it seems that while Spencer's recovery was on such a miraculous pace, my wife's health has been quietly declining. Last night she developed a high fever and since she does not have a spleen, we had to take her to the emergency room. Indeed it is good we did because her white blood cell count is off the charts for her norm and so she is fighting a serious bacterial infection. She has been admitted and will be in the hospital for a least a couple of days.

    This is such a blow....I am now essentially a single dad trying to care for three very needy dependents. Fortunately, I have a fantastic support network and they have already helped in so many ways!

    Shriners has insisted on keeping Spencer while my wife recoups at the University hospital which is only a mile away. This way I can be close to both of them. Unfortunately, this leaves my teenager essentially parentless, but our good neighbors have stepped in to help there as well as Grandparents.

    Anyway, keep us in your prayers. We need them.

    Is it just me, or does it seem that some of us attract adversity like flies to honey?

    Robert
    Spencer's Dad

    11 year old boy with PMD Luekodystrophy
    Nonambulatory, nonverbal, nonweight bearing
    VRO and Pemberton hip reconstruction at age 5
    Nissen fundo at at age 7
    Subdermal spinal drug pump at age 9
    Complete Spinal Fusion Jan. 9, 2007 at age 10.
    118 degree curve before surgery - less than 25 after!!

  9. #9
    Join Date
    Sep 2003
    Location
    Northern California
    Posts
    6,794
    Wow, Robert, you certainly have a lot on your plate. A year from now, you'll look back on this as an interesting story to tell. In the meantime, hang in there and know that we're all thinking of you.

    --Linda

  10. #10
    Join Date
    Aug 2004
    Location
    ny
    Posts
    1,809
    So sorry to hear that news, Robert.

    My experience has been that when it rains, it pours. One month after my son's surgery, the company my husband was working for filed for Chapter 11 bankruptcy. I also recall that when David was first diagnosed, and going for MRI's etc., my dad was in another hospital having triple bypass surgery for a blockage that had just been discovered.

    Please hang in there and thank God you have such great support.

    Keep us posted.
    mariaf305@yahoo.com
    Mom to David, age 17, braced June 2000 to March 2004
    Vertebral Body Stapling 3/10/04 for 40 degree curve (currently mid 20's)

    https://www.facebook.com/groups/ScoliosisTethering/

    http://pediatricspinefoundation.org/

  11. #11
    Join Date
    May 2005
    Posts
    672
    Prayers to you and your family, you're doing the best you can in a difficult situation-

    Renee

  12. #12
    Join Date
    Jan 2006
    Location
    near Philadelphia
    Posts
    1,260
    Robert, I just checked your blog and see that you're all okay -- that's so great!

    Best wishes for a peaceful, uneventful weekend,
    Chris
    Chris
    A/P fusion on June 19, 2007 at age 52; T10-L5
    Pre-op thoracolumbar curve: 70 degrees
    Post-op curve: 12 degrees
    Dr. Boachie-adjei, HSS, New York

  13. #13
    Join Date
    Jan 2007
    Posts
    65

    Home at last

    Yes, we are all ok, and we are all home - finally. Thank you all so much for your thoughts, prayers, and encouragement. I guess one thing this whole thing has reiterated to me is that trouble runs in packs. Hopefully we are now out of that pack and Spencer will have an uneventful but remarkable recovery. His Grandma and big sis got him laughing today, and it cheered my heart.

    Robert
    Last edited by Spencer's Dad; 01-18-2007 at 08:10 PM.
    Spencer's Dad

    11 year old boy with PMD Luekodystrophy
    Nonambulatory, nonverbal, nonweight bearing
    VRO and Pemberton hip reconstruction at age 5
    Nissen fundo at at age 7
    Subdermal spinal drug pump at age 9
    Complete Spinal Fusion Jan. 9, 2007 at age 10.
    118 degree curve before surgery - less than 25 after!!

  14. #14
    Join Date
    Aug 2005
    Location
    S. Jersey
    Posts
    16
    Glad to hear you are home safe, I checked your blog out too... not so fun to have to deal with two patients that you want to be with at the same time! I'm sure you're happy to have everyone home
    Connie - Mom to Billy 5
    (CRS/VACTERLS incl. tethered cord, IA, single kidney, hemisacrum, levoscoliosis with hemivertebrae (fusion T11 to S2/hips 8/06), extra left rib, hypospadius, hypoplastic left leg w/clubfoot and 4.5cm length discrepancy,GI issues) conni60640@aol.com, http://members.tripod.com/conni60640-ivil/
    TC support group http://health.groups.yahoo.com/group/LMC-TCS/
    Congenital scoliosis support group - http://health.groups.yahoo.com/group...liosisSupport/

  15. #15
    Join Date
    Jan 2007
    Posts
    65

    First Post Op Appointment

    --------------------------------------------------------------------------------

    Hi all,

    Just thought I'd update you on Spencer's recovery. We had our first post op appointment today and Dr. D'Astous said everything looks great. He took more x-rays including a side shot which we had not seen before. It's just amazing how "normal" his spin looks now. I mean other than that big metal rod holding it in position...lol. Anyway, his correction looks great and the doc gave us the go ahead for bathing and sitting in his wheelchair.

    Unfortunately, Spencer has had five really bad days in a row, a lot of whining and crying, and we have not been able to tell if it is because of surgery after effects or GI issues. We have kept him on the pain meds from surgery because we have not been able to pinpoint his discomfort, but the doc told us today that most kids are off them by now and he does not suspect pain from the surgery is causing his unhappiness. So we have taken him off the pain meds. The docs are thinking there is something weird going on renalogically and so we are in for more tests in the near future.

    Finally, today he seems to be coming around a little more and we've gotten a couple of smiles out of him. Hopefully he has turned a corner for a while.
    Spencer's Dad

    11 year old boy with PMD Luekodystrophy
    Nonambulatory, nonverbal, nonweight bearing
    VRO and Pemberton hip reconstruction at age 5
    Nissen fundo at at age 7
    Subdermal spinal drug pump at age 9
    Complete Spinal Fusion Jan. 9, 2007 at age 10.
    118 degree curve before surgery - less than 25 after!!

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