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lorrie
08-09-2006, 03:26 AM
Has anyone heard how Amanda and her mum are doing - surgery was to be last Thursday (3rd)?

Lorrie

Amanda's mom
09-14-2006, 10:34 PM
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

lorrie
09-15-2006, 03:21 AM
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

Carmell
09-15-2006, 11:35 AM
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.

blackwidow
09-15-2006, 07:41 PM
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!

Amanda's mom
09-21-2006, 01:13 PM
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

lorrie
09-21-2006, 04:25 PM
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

blackwidow
09-21-2006, 08:08 PM
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. :o

Amanda's mom
09-27-2006, 04:30 PM
Amanda was admitted Monday to have her chest tube removed. All went well and she came home today.
Sue

lorrie
09-27-2006, 04:44 PM
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

blackwidow
09-28-2006, 10:09 AM
So good to hear that the chest tube has come out! I hope she continues to improve and do well! ;)

Amanda's mom
10-11-2006, 02:09 AM
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

Cakedec
10-11-2006, 09:27 AM
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

Carmell
10-11-2006, 04:59 PM
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.

blackwidow
10-11-2006, 05:58 PM
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.

nikyergen
10-11-2006, 07:31 PM
Sue,
Here are our love and prayers at this time of loss. Please know that Amanda's story really touched me. Our daughter has severe asthma and that is what scared me the most about her surgery. As something very small, like stress, would set her asthma in a whirl wind. I am feeling your loss and have tears in my eye's as I am writing this.

Always,
Nikki

lorrie
10-12-2006, 08:54 AM
Dear Sue
I'm so sorry to hear about Amanda. I know there's really nothing I can say to help but you and your family are in our prayers and thoughts.
Love
Lorrie

sam_newyork
10-12-2006, 08:25 PM
Dear Sue,

I have been following your posts about Amanda and was greatly saddened to hear about her passing. Please know that my wishes are with you and your family.

Many hugs,

Sam

flowerpower
10-13-2006, 12:36 PM
Dear Sue,

I have also followed your posts on Amanda and am so sorry and saddened to hear of her passing. Thank you for posting and allowing us to follow your journey. You have touched more people than you probably realize. My thoughts and prayers are with you and your family. I hope you don't mind my sharing this poem with you, someone gave it to my mother when my baby brother passed on years ago.

A Child God Loaned to Us

"I'll lend you for a little time, a child of mine", He said,
"For you to love the while she's here and mourn for when she's dead".
"It may be six or seven years, or twenty-two or three, but will you,
till I call her back, take care of her for me"?
"She'll bring her charms to gladden you, and shall her stay be brief,
you'll have her lovely memories as solace for your grief".
"I cannot promise she will stay, since all from Earth return,
but there are lessons taught down there I want this child to learn.
"I've looked the wide world over in my search for teachers true,
and from the throngs that crowd life's lanes I have selected you".
"Now will you give her all your love, nor think the labor vain,
nor hate me when I come to call to take her back again"?

I fancied that I heard them say:

"Dear Lord, They will be done,
for all the joy this child shall bring, the risk of grief we'll run".
"We'll shelter her with tenderness, we'll love her while we may,
and for the happiness we've known forever grateful stay";
"But should the angels call for her much sooner than we've planned,
we'll brave the bitter grief that comes and try to understand".

Sincere condolences,

Renee