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.

Welcome back chaos!

Today was chaotic but in a good way, the way that I am used to. Michael is home now after a 5 week admission. Today consisted of 9 breathing treatments, 2 g tube hookups, 1 central line hookup, countless medications, a dressing change and the weekly wiping of door knobs, mattresses and light switches. That's on top of meals, snacks, diaper changes, refereeing sibling spats, baths and everything else kid related. Plus, I managed to get a load of dishes and a load of laundry done and supper cooked. I'm exhausted just typing that but it isn't as bad as it sounds. Matthew went to clinic yesterday and has gone from being completely off the growth charts to now in the 20th percentile for height and weight. He is also now big enough for a vest. I am excited since that will make my life so much easier. I am just happy to have all my kids back together again. I will take the chaos of a house full of children over quiet and boring any day. This is my life and while it may be hectic and crazy at times, it is also rich and blessed.

A Salute

Everyone has been talking about love deeds lately and it has gotten me to thinking. I have been trying to do my part to be kind and helpful to strangers but sometimes it is easy to forget to be that way to the ones you love. It is easy to take them for granted and stay angry at them for some hurt in the past. When I thought about that, I thought of my husband. I don't know how I would do all that I do without his support. So I want to salute my husband. To the man that goes to work every day to provide for us so I can stay home and take care of the children's medical needs, to the man that listens to me gripe and moan on a daily basis about how much I hate cf, how bad the kids were that day, and how much cleaning I had to do and still wants to come home every evening. To the man that takes over after a hard days work so I can get a break. To the man that has gone through 3 diagnoses with me, numerous hospitalizations, clinic visits, night time feedings and hook ups, home iv courses, countless breathing treatments, ER visits, surgeries, and many many late nights. To the man that has been there through it all and has never left our side, I salute you. Thank you for being on my team in this daily battle against cf. I couldn't have picked a better team mate.

My vent for the day...

Ok today I am just angry!! I am angry that my children have cystic fibrosis. I am angry that they have to do vests, and nebulizers, and take so many damn medications. I am angry at the insurance company that says they won't pay for their enzymes unless they are on a generic form when there is no generic form! I am angry that my 6 year old son has to lay in a hospital bed for 5 weeks instead of enjoying his summer like a "normal" 6 year old boy. I am angry that they had to cut into my 11 month old to put a feeding tube in and that I had to say it was alright to do it. I am angry that I have to watch my son cough until he's blue and needs oxygen. I am angry that cf steals so many young lives that have SO much potential. I am angry that it is stealing my children's lives one breath at a time and there's not a damn thing I can do about it. I am angry that I feel so helpless all the time. I am angry today at cf and what it does to my children.

Progress

So happy today! The kids are gaining weight. Abby is up to 61.6, Michael is up to 35.8 and Matthew is 18.4 pounds. At this rate, I will have to buy everyone new pants! I am glad that Abby comes home tomorrow. It has been kind of boring and quiet around here. I am so used to the chaos of three. I have gotten into the routine of hooking up Matthew's tube up at night. We are using 24 calorie an ounce formula and can't buy it, so I have to mix it at home. I am still trying to work out the recipe because the one they gave me is for ounces but the bags use milliliters. Math is not my strongest subject. I will be so glad when Michael comes home. I will have all my kids together under one roof for the first time in over a month. It is always hard being separated from them. I am so thankful that at the end of all of this is a trip to the beach. We will have time to spend together, as a family. After the past few weeks, I think it is just what the doctor ordered!

Separation anxiety

Phew, I am glad Matthew is finally asleep! This separation anxiety he is going through is killing me. If I even think about leaving the room, he has a meltdown. I feel so bad for him, but I have such a small window to get housework done between treatments, medicines, meals, baths, dressing changes, and g-tube hook ups. Some days I feel like I am running in circles between all three kids and never stopping to give any of them my full attention. Then the mommy guilt settles in and I vow to do better the next day. It is hard being nurse, respiratory therapist, housekeeper, wife and mommy to 3 all at the same time! I talked to the pediatrician about Matthew's separation anxiety and tried the things she suggested. Things were getting better for awhile and then he went into the hospital and now it's worse than ever before. I'll just keep telling myself that it means I am doing a good job since he looks to me for comfort. Hopefully, I can get him out of this phase before Abby and Michael come home. I am so thankful that they are staggering their discharge dates, so I can ease back into things. Abby comes home on Wednesday. I am glad, but at the same time, that leaves Michael in the hospital alone during the day. I hate that I can't be with him, but I have to be here for the other two. I am constantly pulled in so many different directions. I am not complaining though, I am truly blessed to have such amazing children. I just wish there were more of me to go around. I really need to clone myself!!

Good day

Matthew came home yesterday! It is so nice to have him here with me. Michael and Abby did their pfts yesterday and both of their numbers were up. I have been so scared for Michael for the past two weeks. His numbers were right around 43 for a long time. When he was admitted they were 21 %. We were told when they dropped to 30 and stayed there, he would go on the transplant list. Yesterday, his numbers were in the 50s!! That is the second best he's ever done. It eased some of the worry that I have been feeling, although as a parent the worry never disappears. Abby's numbers were back up in the 80s where she normally is if she is not sick. I am so happy that they are both doing much better. Matthew is doing well with his g-tube. It was such a major decision to have him get one but now that it's over I am glad that we did. He has already started gaining 300 grams a day, instead of the 8 grams a day he was gaining prior to the tube being placed. He is such a happy, lively child. Well, they all are really. I don't know how they go through all this stuff and still remain happy, upbeat, loving, and gracious, but they do. My children make me proud every single day and I am honored to be their mother. They are my heroes.

Simply amazing

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.

Crazy day

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.

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!