Angela
05-04-2009, 05:52 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.
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.