 Caregiver Diary -- Gelene Doolittle
Monday, June 10 2002
Victoria's life has been a miracle from the start. I had 2 miscarriages early in pregnancy. My GYN told me I would most likely not be able to carry. At that point in my life I would have rather died. I have done so much, seen so much, and accomplished much more than thought possible -but it meant nothing, In my soul all I ever wanted was a family. Weeks before my 35 th birthday I laid face down at the alter of our church in Syracuse and begged God to take me home if I would never have a child. Shortly after I found out I was pregnant. 8 1/2 months later a perfect baby girl was brought into this world. Her apgar scores perfect. She was the one in the nursery that cooed and looked sweet - the one everyone who looked through the glass wanted to take home. The Good Lord gave her to Bob and I. My life was perfect.
As a child Victoria had a few ear infections but never any major illness. If she had any negative aspects it was stubbornness (which I see now is a gift) and the fact that she did not sleep through the night for a couple years.
One winter Bob had a car accident forcing him into early retirement. We moved south and just stopped in Georgia. Bob became the stay at home parent and I was offered the best Nursing job in the world. I even work from home.
Victoria started school and we did all the usual activities. As she became older she played defense on her soccer team. She was doing gymnastics but when a summer break came she decided to try Tae Kwon Do. That was the last of tumbling. Years later she is a second degree black belt and instructor. Trophies winning national tournaments (against boys even) line our walls. She's smart, kind, and beautiful.
Close to a year ago our world crashed down around us. I brought Victoria to her doc because I thought she might be coming down with bronchitis - nothing unusual with allergies in South Georgia. I also noticed a slight blue tinge on her lips that lasted only a couple minutes and never seen again. Her lungs sounded fine. We went for a chest x-ray. She has had one yearly but this time was different. Victoria's doc got a funny feeling and admitted Vicki. Turns out she was right. The right side of Victoria's heart was 2 sizes too large. An echo was done and before we could blink we were whisking off to the University of Georgia in Augusta. Many tests were done and a cardiac cath gave us the diagnosis of PPH. Nothing else was wrong. Dr. Gossage is a leading physician who made the diagnosis (pressures of 150). As he does not treat children Vicki was started on CCBs and we were sent home - her records to Dr. Fricker at the University of Florida Shands. Within days Victoria was in ICU, starting flolan, and completing her work up for lung transplants. Once we had a chance to breath Bob punched a hole in the wall and I have not stopped crying since. At this point part of my died.
Tuesday, June 18 2002
We are coming up on 1 year since diagnosis and flolan. Our trust in God is still strong but honestly we do waiver at times. Victoria seems to be the strongest but it is so hard for her. Before all this she was running and playing with friends. Spring and summer were great times for getting wet. She still gets together with friends but getting hosed is a thing of the past. She can no longer breath well in the heat and then if it gets below 75 she freezes.
I curse this diagnosis and myself for whatever I did wrong to bring this about. I have dealt with death so much personally and as a nurse. I accept the normal progression of life to death. In an adult you can rationalize it but in a child there is no reason. In my baby I can't even begin to understand. I hang onto my anger - it gives me strength - it gives me fight and the will to go or do anything to try and cure my daughter. I look at all these young kids who are criminals, murderers, and thives and I wonder why not them - why Victoria who has so much to offer. I'll never have an answer to that question. All I know for sure is it isn't fair.
The flolan/tracleer is not working. In this last year there should be some lowering of the pressure. Dr. Fricker fears permanent damage could be done to Victoria's heart if this goes on. Victoria has been moved to the active transplant list. In her blood type and size she is number 4. The "call" can come at any time. She understands the surgery and knows she will be sick and in pain for some time, Bob and I can't bring ourselves to give her details, statistics, etc. Does she really need to know? Shouldn't she have some bit of carefree time? When will she ever get to enjoy just being a kid. I feel in my heart she will bury me. God has to be in control - certainly we aren't.
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