We are all OK

I went away for 4 days for some much needed R & R. Fighting CF is like trying to build a sand castle in the waves. Sometimes you make some headway and see the potential of the finished product and then a wave comes and destroys all your hard work. You always know the inevitable outcome but you cling to the hope that some day the waves will recede and you will see the beautiful, finished work of art. I was hoping that lessons would be learned while I was away (i.e. my husband would GET it) but it was me that learned some lessons and I will share them with you now...It is ok if things don't get done the way that I would do them as long as the outcome is the same. I need to let go of some of the control and realize that other family members are just as capable as I am of taking care of my children. I need to take care of myself so that I can better take care of my family. Being a martyr is no fun and doesn't do anybody any good. The bad thing about martyrdom is it always ends in death for the martyr. Who wants that?? I went away for 4 days and no one ended up in the ER, bleeding, needing stitches or unconcious (although I did come home to a 16 inch bass in my koi pond). My household and family continued to run without me and that is ok. It is ok if I want to take some time for myself so I don't get swallowed up by the responsibilities that come with being the mother of 3 CF children. It is true what they say that being a mother is the hardest job in the world and when you factor in the CF, it is doubly hard. Some days I go to bed and feel like a complete failure and other days I go to bed and feel like I did an awesome job and that is ok too. I learned that I am going to make mistakes and the only unforgivable one is failing to forgive myself for them. Instead of trying to live up to someone else's idea of what a "good mom" is, I am going to embrace the mom that I am. I am far from the perfect mom but I am the perfect mom for my kids and I am ok with that.

Ranting and Raving

This is probably going to be my longest blog post to date and I am probably going to rant and rave like a lunatic but sometimes you have to, right? Michael is still in the hospital after a month and two days. We had a meeting with the doctors today and found out that his liver is enlarged. They have done an ultrasound of it and found nothing wrong so they are just going to keep an eye on things for now. They don't believe that he has developed CF related liver disease and feel that it is due to his rapid increase in weight. They are going to be doing an echo on his heart before he is discharged because of all the drops in his saturation. They want to make sure that he hasn't developed "Cor Pulmonale" or pulmonary hypertension due to his heart having to work so hard to pump blood to his damaged lungs. His X-rays look worse this time than they did last time and there is no doubt of a double lung transplant in his near future. That being said, we need to work on his nutrition and get him to gain weight on a steady basis before they will send us for consultation with a transplant team. We want to have as many factors in our favor that we possibly can before we go down that road. He will also be coming home on oxygen (he has been on oxygen at night, but now they want him to have it when he is out playing) I am just disheartened by it all. I hate watching him slowly decline over time and I want so badly to just scream, cry, beg God to make him better, but most of all, I just want to take his place and suffer through this for him. I feel so desperate to be doing something more for him. I ache with the need to make things better for him. I don't even know how to put how I am feeling into words because I have never felt this way before... I guess it is just sheer desperation because I just can't lose him.

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??

It's time

Michael has been doing well lately. His pfts are 49 which is actually great for him and he has been putting on weight BUT it is time for transplant and we are talking with the doctors about where. My first choice was somewhere in North Carolina because I have family there and feel I would have help and support. We looked into Duke but they don't do transplants on anyone under 14 years of age. Still waiting to hear back from UNC Chapel Hill and might possibly be contacting Children's Hospital of Pittsburgh. I am not sure of the timeline but I will keep everyone updated.

On a positive note, we are expecting!! We have a healthy baby boy who is due on July 19th. We already had all the testing done. He is a carrier but will NOT have cf. That is the first time I have gotten that call that one of my babies will not have cf and I can't even begin to describe the feeling. I sat on the porch steps and just wept with joy. We had planned on being done after Matthew but things changed for us with Michael's prognosis. There is no guarantee with cf and though we already have two boys, we aren't sure that they will be able to carry on the name. This is our chance to have a child who may survive us. So that is the update for now.

No regrets, just love...

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."

1,2,3,4,5.

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.