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Angela
05-04-2009, 06:52 PM
I have been a part of this wonderful information sharing site since Meghan was trached in October of 2007. I have never really had the time to tell our story due to her being so sick. I do follow many of your stories and check as often as I can to see how everyone is doing.

Meghan was born with Williams Syndrome and also has an undiagnosed rapid degeneration disorder that no test has been able to tell us what is happening to her. A lot has changed with Meghan over the past 2 years, her seizures have increased, has developed a tremor disorder that medication is not controlling very well, somedays she has a hard time walking and she is very sleepy most of her days. She was trached at the age of 15 due to the loss of her upper airway. Her upper airway is obstructed with cysts, lymphatic tissue, her epiglottis no longer protects her airway and she has lost her swallow. She has lost all functioning of her digestive system and in the past 3 months we are on our 5th central line. The last 2 lines were infected from MRSA and during her last MRSA infection she went into septic shock and was in the hospital for 1 month. That was by far one of the most scary times with Meghan. She developed masive clots from her picc-line. Due to the clots they were unable to put in a new mediport or a picc-line in her arm. They ended up putting in a femoral picc-line that is in her right leg. Dressing her is quite a challange. She is on TPN for 19 hours a day and j-tube feedings of pedilite only, just to keep her bowels stimulated. We used to be able to eat dinner with her and worked very hard at teaching her how to eat, only to one day to never feed her again. Her intestines no longer absorb nutrition, so now it looks like she will be on TPN for the rest of her life. She has spent well over 100 days in the hospital since October. She is in and out of the hospital every 2-3 weeks due to infections. Her body does not seem to fight infections as well as it used to. We also have had our share of MRSA and Pseunomis in her trach.

Meghan is the light of my life and I have been fighting very hard to figure out what is happing to her. She has been put throught so much testing that I may one day have to accept that we may never find the answer. Doctors cannot tell us how much longer we will have Meg, they can only tell us to enjoy everyday we have with her. I will try to post a picture of my sweet princess. Just wanted to take some time to introduce Meghan.

kirafaesmom
05-04-2009, 09:01 PM
I"m so glad you introduced Meghan to us! She sounds like an amazing young lady. It's very obvious that she is the light of your life. I am sure she knows she's well loved. I hope you are able to find answers. If not; I hope you can find the grace to accept that there simply are times that answers are not to be found. We too have a very complicated little girl that at the moment, has us all puzzled. I look forward to seeing a picture

alizesmom
05-05-2009, 12:05 AM
I am looking forward to seeing a picture of Meghan. Thank you for telling us about her. Karen

JWorthington
05-05-2009, 06:53 AM
Thank you for sharing Meghan's story with us. It must be so tough for her, getting a trach at 15. You have all been through a pretty rough time and sometimes there are no answers, but I'm sure Meghan knows the love you have for her :hug:

Julie x

cherienz
05-05-2009, 07:08 AM
Sending you hugs and wishing you and your family all the best. She must be a trooper, so hang in there.

XX Cherie

My little figther
05-05-2009, 08:11 AM
Thank you for sharing your little princess story with us. She seems like quite a a young lady and must brighten your days and it is obvious you love her very much and I am sure she must feel it. Hang in there!!!
Michelle

babybear
05-05-2009, 09:10 AM
Thanks for sharing Megan's story with us. I'm sorry she's having such a rough time. I know a boy (he's 24 now) with William's Syndrome, and he's the most pleasant person I've ever met!