Tuesday, October 03, 2006

We are a family separated by 2000 miles since October 2005 because of my daughter Macy's Congenital Heart defect HLHS. Unfortunately Macy developed a side effect of her last heart surgery in 2003 called Protein Losing Enteropathy, it has caused her to hospitalized on many occasions for infusions with each stay having it's own set of complications and different lengths of stay in the hospital.

In October of 2005 we were air lifted from Tucson, Arizona UMC hospital to Ann Arbor, Michigan C.S Mott's Children's Hospital because this is were Macy had all 3 of her heart surgeries and they are most familiar with her. Macy had Blood Clots forming through out her body and caused her to have stroke like symptoms. We were told of a procedure that could help her and the risk out weighed what was happening, she was to be the first child ever to have x-sizer or ing to be done....this is a procedure that had only been on adults but never a child. Basically they rotto rutter some vessels knocking out clots and sucking them out at the same time so they do not travel through her body and possibly to her brain to cause damage. Through MRI's and CT scans which are some of the most sensitive tests available ruled out that Macy had a stroke. What is believed clots that had formed changed the way that the blood was allowed to exit Macys brain and cause tremendous pressure which cause her stroke like symptoms. Macy has had to re learn every thing and since the x-sizer she has done nothing but improve.

We knew of Macy's heart defect before she was born in April of 2001 and decided to go to the University of Michigan/ C.S Motts Children's Hospital in Ann Arbor Michigan.
We are in the hospital right now with PLE issues and now a blood infection.

~Molly Weatherly

*Sept.Update - Macy is doing really well right now, we are still in Michigan, she goes to U of M Rehab 2 times a week for PT, OT, Speech and Motor group. She was hospitalized for two months after we arrived in Michigan, then starting in June she was in and out of the hospital for two months with PLE issues along with complications again.

I will not take her back to Arizona, so we are still trying to relocate...our house is on the market my husband has been filling out applications for work, he has flown here a few times to take test with no luck yet. I have only seen my 14 year old daughter Desiree while Macy was in the hospital in June through August. Desiree has started her first year of high school in Tucson because we are not even close to being situated yet. I have started taking wellbutrin again in hopes to cope and feel better about all of this. My heart aches for Macy all the time even when she is doing well, because of many things and I know it is only a matter of time before something sets off the next PLE episode....like just having HLHS is not enough...I take her to the play ground and I watch her struggle to do what normal kids do with a breeze....I watch her when she plays with healthy kids and how they leave her in the dust...all this is just heart wrenching to me all the time. I love her to no end even though it hurts so bad. I have never felt so crushed in all my life. I really do not have much to offer any one any more....I hang on to the love she gives me...the cute things she says and does this helps me through my days. I believe there is a God, I have had the realization, I am so hurt and angry I have not been able to go there since I found out that I was having a baby with HLHS and through it all what I have seen and dealt with makes me continue to feel the same.

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