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Thread: Sue and Amanda

  1. #1
    Join Date
    Apr 2004
    Location
    Morpeth, Northumberland
    Posts
    194

    Sue and Amanda

    Has anyone heard how Amanda and her mum are doing - surgery was to be last Thursday (3rd)?

    Lorrie

  2. #2
    Join Date
    May 2006
    Posts
    19

    Hello Lorrie, Amanda is finally home

    Oh Lorrie,
    This has been Amanda's longest hospital stay. She was in the hospital 42 days! She had a posterior Spinal Fusion Surgery Aug. 2rd. Orthopedic wise she is doing wonderful. The surgeon showed us a x-ray immediatly after surgery. I cryed because she has a straight spine now. She is at least 2 inches taller.
    The problem was respitory. She was on ventilator overnight. They removed the tube in AM. That night they had to put a tube back in. She was on vent. for a few more days. She developed a infection in breathing tube that went into her lungs. She was in ICU for 10 days. 3 days after surgery she developed a pnemothorax. They believe a needle when they put in the central line, or a surgerical intrument put a very small hole in Amanda's right lung. She had to get a chest tube. She had a chest x-ray every day, sometimes 2. A nurse said, Amanda should be glowing due to all the radiation frome daily chest x-rays. They had to take her back to surgery 3 weeks after surgery and make another hole to insert a camera to view the lung. They could not find the problem and preformed a Plorindeus (sorry about spelling, I'm still very tired). It failed and only clogged the chest tubes, that had to be cleaned out over 3 days. (this was not painful to Amanda). They did place another chest tube in the hole they used for the camera. The right lung would go up and down, puzzeling the doctors. The lung still has a small ridge of air/fluid. We were in a hospital 2 hours away from home, so I asked f care could be taken care of at home. The surgeon really did not want to do it, but understood and transferred her care to a local surgeon who had preformed surgery on Amanda before. They removed 1 chest tube before we left and placed a device called a Himlic Valve on the remaining chest tube. Amanda is home and home health nurses are coming daily to our home. Amanda sees the surgeon on Monday. We hope and pray that she will remove the remaining chest tube.
    Amanda also had a intestinal blockage, a urinary tract infection, and gastritius during her stay.
    WE ARE SO GLAD TO BE HOME!
    sue

  3. #3
    Join Date
    Apr 2004
    Location
    Morpeth, Northumberland
    Posts
    194
    Dear Sue
    What a terrible time you people have had - I wish I could give you such a big hug!! You must have been so scared for Amanda. She's a real little fighter, isn't she?
    I can really understand why you were so keen to get her home - even if the nurses are having to come in daily. It's so much easier to cope when you have all your own equipment around and your own bed to fall over in a heap in. Amanda'll be much more relaxed too which will help her get well.
    42 days is such a long time (we were in for 30) - you start to forget what 'normal' life is like!
    I'm so glad to hear from you - I was sure something must have gone wrong and I was really worried about you.
    Prayers and hugs winging their way through the ether to you both!!

    Love
    Lorrie x

  4. #4
    Join Date
    Oct 2003
    Location
    Utah
    Posts
    1,010
    Sending big hugs to you, Sue and Amanda. I hope her domino-effect of lung problems are over and she can finally start healing well. Best wishes to you both.
    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/

  5. #5
    Join Date
    Jan 2006
    Posts
    78
    Hi, Amanda's mom
    I had been following your posts about your daughter. Amanda sure has been through a lot and you as well. 42 days in the hospital is a very long time. Good for you that you arranged it with her docs to bring her home. One can only take so much of being in the hospital that long. I'm very sorry to hear that she had the respiratory complications. I know it was what I feared most concerning my son's surgery. It is good to hear that her spine is relatively straight now. It is unbelieveable when you see the x-rays. Hopefully, by being at home she will be in a more comfortable environment and can heal up faster. Big hug for getting through this with her you're very strong! Keep us posted on her progress and take care of yourself too!

  6. #6
    Join Date
    May 2006
    Posts
    19

    Amanda has pnemonia

    Amanda had a evelvated temp. on Saturday AM. I called the surgeon and she said to bring her into the ER. Amanda has pnemonia. She was in the hospital over the weekend and came home on po antibiotics on Monday. She is feeling much better. She will see the surgeon on Monday and pedi on Thursday. Hopefully the chest tube can come out soon. They believe that is why she got the pnemonia, but right now it is still draining fluid so it has to stay in. I'll ask Monday about maintance antioboitics until the chest tube can come out.
    Sue

  7. #7
    Join Date
    Apr 2004
    Location
    Morpeth, Northumberland
    Posts
    194
    Hi Sue
    So sorry to hear Amanda's had another set back. These children really like to keep us on our toes don't they?!
    I'm glad you're home again and I do hope they can get that tube out soon for - infection's always a risk with these things. Maintenance antibiotics sound like a good idea.
    Sending you both hugs,
    Lorrie

  8. #8
    Join Date
    Jan 2006
    Posts
    78
    I'm sorry to hear about Amanda too. It breaks my heart to hear that she has pneumonia. I know it is rough when they have it. It sounds like you were on top of things and got her in right away so that she wouldn't have to be in the hospital too long. The IV antibiotics help kick it right away. I'm surprised they didn't send her home on prophylactic antibiotics to begin with. I suppose they figured they didn't want her to be resistant to anything should she come down with something. Hopefully, next week they will be able to take the chest tube out which will probably help a lot and continue the antibiotics thereafter. Hang in there.

  9. #9
    Join Date
    May 2006
    Posts
    19

    Amanda finally got her chest tube removed

    Amanda was admitted Monday to have her chest tube removed. All went well and she came home today.
    Sue

  10. #10
    Join Date
    Apr 2004
    Location
    Morpeth, Northumberland
    Posts
    194
    Brilliant news, Sue! I know Amanda's still got a long road ahead of her but that's really a step in the right direction.
    Hugs
    Lorrie

  11. #11
    Join Date
    Jan 2006
    Posts
    78
    So good to hear that the chest tube has come out! I hope she continues to improve and do well!

  12. #12
    Join Date
    May 2006
    Posts
    19

    Sad news

    Dear Friends,
    Our precious Amanda went home to be with the Lord Wednesday Oct. 4, 2006. She had recovered from all her problems and the surgeon had released her and her pedi. said she could start back to school next week. She was not breathing well or looking good Wednesday so I called her doctor and she told me to take her to the ER. We arrived and the nurse took a quick look as her and said they would have a room in a minute and to take a seat in the waiting room. Amanda passed away just a few moments later. It was found that she had severe heart disease. We know she is in heaven and waling, running, talking and singiing all over heaven. All things she could not do on earth. We will miss her so much, but know we will see her again.
    Thank you all for your prayers for Amanda. God did answer them. He gave her the ultimate healing. I am so happy for her.

    Sue

  13. #13
    Join Date
    Oct 2005
    Location
    Grand Rapids, MI
    Posts
    313

    So sorry to hear about your loss

    Dear Sue,

    I was so sad and sorry to hear about Amanda's passing last week. Thank you so much for sharing it with us on the forum. Many of us have been reading and following her progress with you. What a precious, courageous little girl!!

    I have a son who was born with severe heart disease and he was prone to lung problems and pneumonia as a small child. No doubt the heart condition contributed to your daughter's difficult recovery, as well.

    My tears are falling for you as I have lost 3 babies to miscarriages. I know that there is not much comfort at this time, but I have no doubt that Amanda went straight from your arms to the arms of Jesus and is being tenderly cared for by him now. Someday we are going to be reunited with these children and they are going to be healthy and run straight into our arms as if no time at all has passed. Then we will never again be separated from them for eternity.

    Our hearts and thoughts go out to you,

    Deb
    age 47
    posterior surgery 7/24/06
    for S curve 70/76
    30 degrees correction

  14. #14
    Join Date
    Oct 2003
    Location
    Utah
    Posts
    1,010
    Dear Sue,

    Our sincerest thoughts and prayers are with you and your family. I can't begin to imagine the sadness you feel. Please know that your family will be in our thoughts and prayers as you continue to heal. Amanda is your beautiful angel and will be watching over you until you meet again.
    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/

  15. #15
    Join Date
    Jan 2006
    Posts
    78
    Sue,
    I read your post earlier today and I'm deeply saddened to hear about Amanda. These kids go through so much that it is heartbreaking. You do everything you can to give them the best life possible. I have a lot of respect for you. You are a good mom and you did everything you could for her. Please know that. You are in my thoughts and prayers. I hope you have good support from family and friends that will be their by your side to help you heal.
    Linda
    Mom to Hunter (10 yrs old), status post posterior spinal fusion T1-sacrum 7/24/06 w/spastic quad CP

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