Thursday, October 21, 2010
We have a nurse two days a week now and it has been wonderful. It is so nice to be able to just be mom and still have all their medical needs met. I have time to sit down and play chess with my daughter, do art projects with them and I get to go do things on my own. I have really needed this. Michael is on oxygen at night now. The doctor feels it will give his body a break from working so hard to breathe and burning calories. I am frustrated that we had to do that but he seems to have more energy during the day so I guess it's a good thing. I am also frustrated because we got his prognosis and then they sent us home. I feel like we should be doing something, doing anything to fight. I guess we are doing it little by little but the lack of results is driving me crazy. He gains, then loses, doesn't throw up and then does throw up. It's maddening. I hate feeling so helpless. On a positive note, Matthew and Abby are doing well. Matthew has never lost weight his whole life and Abby's cough went away and her pfts came back up after a round of Levaquin. Matthew got his vest and loves it which is such a relief. The vest is so tiny it would be cute if I didn't have to look at it as something he needs every day just to survive. Michael's prognosis and everything that has happened in the cf community lately has really taught me that there are no guarantees in life. I am working really hard to let my kids know that I love them. That being said, I will leave you with a quote from a Katy Perry song that really hit home with me and is how I am choosing to live my life..."No regrets, just love."
Sunday, October 10, 2010
It takes such a short time to count to 5. That's because 5 is such a small number. Especially when you are talking about life. If someone told you that you only had 5 years to live, would you think it was enough? What if we were talking about someone who is only 6 right now? Because we are. We were told about 3 weeks ago that Michael's prognosis is 4-5 years without a double lung transplant. The Doctor informed us that when she goes to the CF conference this month, she is going to talk to the transplant team in Pittsburgh to find out if it is too early to put Michael on the list. Usually they wait until the fev1 drops to 30% and stays there. Michael's is 47%. It is a good thing if he can go on the list now. I don't want to wait and watch him get sicker and sicker and possibly die waiting. We made the decision to pull him out of school so we really have time to work on his nutritional deficiences. The Doctor said if we don't put some weight on him, he may be rejected for a transplant. He has been out of school for about a month now and is already starting to gain weight. I feel like we made the right decision. I personally didn't want to send him to school to be with strangers all day. I don't want to have any regrets. Should the worst happen, I don't want to look back at all that time he was in school and wish that I could have spent it with him. I don't know if it is a blessing or a curse to be aware of every moment and not take anything for granted. I wish I had the luxury of taking things for granted. I don't. Ever since talking to the Doctor, I watch him and think "Please, Dear God, don't take him from me." I cherish every kiss, every hug, every second I spend with him. Not that I don't with my other two but things have changed for me now. I am scared, mad, sad, hopeful, exhausted, and just an emotional mess. We have chosen not to make this public but I just need to get it out. I knew most of you would understand. The day after we got Michael's prognosis, I was at Food Lion and saw a woman berating and scolding her child for peeing himself in the store. I got SO pissed!! I wanted to scream at that woman and tell her "I was just told that my son's life is in jeopardy and you are berating your kid for peeing himself??" "Do you know how lucky you are that that is your biggest problem???" So right now I am working on letting all my children know how much I love and cherish them, and spending as much time as I can with them. Do me a favor, if you have children, kiss them one extra time tonight, hug them a little tighter and truly let them know that you love them. No Regrets.