Wednesday, June 30, 2010
I just had to tell this story because it is amazing! The kids and I are planning on planting a red rose bush in memory of Conner but haven't had time to pick one out with them all being in the hospital. So today I am at the hospital with them and I go to the cafeteria to get something to eat. The cafeteria was closed, but in the hallway, guess what they were selling...red rose bushes!! I couldn't believe it. I told the woman the story of Conner and how my kids with cf wanted to honor him and she handed me a rose bush. She said "I was planning on buying this one because it is so beautiful but I think you should have it." I thanked her and started to walk away. As I was getting on the elevator, I looked down at the rose bush and noticed it had 7 buds on it. I got tears in my eyes. The rose bush is now sitting on my dining room table waiting for my kids to come home from the hospital so we can plant it together. What a beautiful thing to happen today! I am in awe of how one little boy could inspire so much love. Conner's story has touched my soul and I will never be the same.
Tuesday, June 29, 2010
What a day it has been! Michael was accidentally given Abby's dose of Timentin so he got double the amount he was supposed to get. I had to meet with the nursing coordinator and the quality review specialists to put some plans in place to ensure that never happens again. They are going to color coordinate all the meds from now on. I know that it is confusing having 3 patients in the same room with the same last name but I am irritated nonetheless. Hopefully we have it straightened out now and the nurses take it as a learning experience. I have a lot on my mind today. Some days I wish I could see into the future and know what it holds for my children. Maybe it's a good thing that I can't because I don't know if I could handle what I see. I have so many questions swirling through my mind right now. Will Michael make it on the transplant list?, will he survive long enough to receive one?, and if he does, will it be successful? Will Abby grow old enough to have children of her own someday and if she does, will she live long enough to see them grow? Will Matthew's disease be as severe as Michael's? Will a cure come in time to save them? Is it sad that I pray every day that I die before my children? I don't pray for death for MYSELF but I pray for a long, healthy life for THEM. I try to tell myself that we are not facing a double lung transplant right now, but the reality is, we will be in the near future. Maybe it takes that long to prepare for something of that magnitude. Hopefully tomorrow I can be more upbeat but the reality of being a cf parent is that it's a roller coaster ride and some days are better than others.
Monday, June 28, 2010
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!