Monday, June 28, 2010
Three in the hospital
You will have to forgive me if I make any mistakes as I am new to this blogging thing. What a week in the cf community! I think all of us in our own way are dealing with the loss of Conner. My three children are currently in the hospital. They are all crammed into one room together. What a crazy time it has been! My 10 month old (Matthew) getting a g tube, and trying to eradicate pseudomonas, my 6 year olds fev1 dropped to 21 percent and my 10 year old (Abby) fev1 dropped from 89 to about 43. I finally asked the doctor about my son Michael's prognosis (the 6 year old) and he said we are looking at a transplant within the next 5 years. Once Michael's fev1 drops to 30 and stays there for 6 months to a year, it is time to put him on the list. I am so scared for him! I have had so many emotions in the past 4 days, it is unreal! I think the worst part about being a cf parent is feeling helpless every minute of every day. I watch my son Michael cough until he is blue and I know that I am doing everything I can for him but it feels like it is never enough. On a positive note, Michael did his pfts today and his fev1 was 43. Abby's was 75. So they are both on the right track. I wanted to create this blog so people could follow me on my journey of raising 3 children with cf and the challenges they face on a day to day basis. If you have any suggestions, I would be happy to hear them. Thanks for joining me on my journey!