Back in

Michael is in the hospital again. This time his port got infected and had an abcess underneath and above it. He had to have the old port removed and a drain placed to help the abcess heal. Also, while he was in, his jg tube broke and had to be replaced. They were able to replace the tube with no anesthesia, which is wonderful. Every time he has to be put under, I worry. His lungs are so fragile that sometimes he has trouble coming out of the anesthesia. Last time, they had to bag him for 10 minutes. It scares me so much! The surgeons had to put him under to remove his port and everything went smoothly. He had the drain removed on Wednesday and now we wait a week before they can put a new port in. I hate this disease more and more with each passing day!! Every time I hear of a young person dying from it, watching it rob my children of their childhood and force them to be wise beyond their years, watching it steal my son's breath and make him cough until he's blue, watching them lay in the hospital during birthdays, Halloween, Valentine's Day and other events. I am tired of the sadness, the fear, the anxiety, watching them be in pain, the helplessness and hopelessness, the uncertainty, and the time it slowly steals from us. It is such an emotional roller coaster and I'd like to get off now, please??

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!