Leap of faith

As many of you know, we went to Pittsburgh to have Michael evaluated for a double lung transplant. It was a lot of information and emotions to process. I feel I am now ready to give the details of the evaluation so here goes; First and foremost, the doctors at Pittsburgh do not feel that Michael is sick enough to need a transplant right now but they do agree with our doctors here that it won't be long. The thing that stuck out in my mind with that information is that we will have to watch him get sicker before we can do anything for him and as a mother, that thought breaks my heart. I am glad that we have the option of a transplant but I do not want to watch my child get sicker and struggle even more. There were so many things that we (or maybe just me) were naive about. I knew that transplant is a HUGE risk and is by no means a cure but I had no idea how many pros and cons we would have to weigh. Here are some interesting things we learned: If Michael gets a transplant and a cure for CF comes later, it won't do him any good. Basically, once lungs are transplanted, they will start to degrade at some point. It's just not knowing when. Lungs are complicated because they have access to the outside world. So once he goes through the transplant we have essentially started a ticking time bomb and won't know when it will go off. That is why we are not listing him now. The longer a person can go with the lungs they were born with, the better. His chances are 50/50 seven years post transplant. We know he has a 0% chance if we do nothing so that 50% is looking pretty good. Also, we found out that there is a 10% chance that he could develop Lymphoma due to the T cells being supressed for transplant. That is a type of cancer that responds well to chemo but I had no idea that was a risk. We also asked the best case/worst case scenario question and were told that the best case scenario is that he does well and lives another 10-20 years. The worst case scenario is that he goes into instant rejection and doesn't make it out of the hospital. The good news is there is nothing stopping him from getting a transplant. He doesn't have B. Cepacia or any other bacterias that will keep a transplant from happening, his heart tests came back looking good and all the other test results were well within what would be normal for a person needing transplant. We also found out that Michael would be in-patient for about 2 weeks post transplant (assuming all goes well) and we would have to stay in Pittsburgh for 4 weeks following that so he can be followed closely and checked for rejection. At the 6 week mark, they would take a tissue sample from the new lungs via bronchoscopy and check for rejection. If there are no problems, we could then bring him home. They would follow up with taking tissue samples at 6 months, 9 months, 12 months, 18 months and 24 months post transplant. Pittsburgh did give us a few recommendations of things we could change around for Michael and he seems to be responding well to the changes. He is holding steady with Pfts around 40%, he is no longer receiving TPN due to the damage it was causing his liver and the risk of sepsis from having an open line but we are now having to do tube feeds around the clock. Michael is tethered to a pole for 20 hours a day so he can get his daily recommended 3000 calories. He does eat but there is just no way he can consume enough calories for him to gain weight when his body is burning them working so hard just to breathe. When we got home, Mike and I had a discussion about whether we wanted to go forward with transplant when the need arises and luckily, we both agreed that we want to pursue it. We both feel that we need to give Michael every possible chance. I'm so glad that we were in agreement. It made things at least a little easier. I think the scariest part is not knowing what is going to happen. Obviously, no one can see into the future and tell us exactly what Michael's outcome is going to be but sometimes you just have to take a leap of faith and believe that things will work out as they are meant to be.

Special needs, Special Moms

I will post about Michael's transplant evaluation as soon as I can put my thoughts and emotions into words. It was a hard 3 days and I am just not quite ready to talk about it as I am still processing all the information we received. So for now, here is an observation I made while in Pittsburgh that made me proud to hold the title "Mom".


WOW. I learned so much in Pittsburgh at the Children's hospital. I saw so many children in so many different levels of disability/special needs and I was in awe. It amazes me that God has made so many special children but that is not what I was in awe of. I was in awe of all those mothers tending to their disabled/special needs children and not thinking a thing about it. Whether it was a mother pushing her bald daughter's IV pole that held chemo drugs, a mom carrying a little girl with leg braces, cotton candy pink glasses, pig tails and the brightest smile on her face or the mom who was pushing her son in a wheelchair. It made me realize that we, as mothers, are some pretty resilient people. We expect, hope, pray, and assume we will have a healthy, "normal" child when we are pregnant but life doesn't always work out that way. We pick ourselves up, dust ourselves off, and carry on with the new life we have been handed. I am not putting dads down, I am only speaking to motherhood because that is all I can personally attest to. I think every child has "special needs" whether it be extra help learning something new or just someone to love them. I don't really agree with the term special needs. I don't think my childrens needs are any more special than your childrens but I do know one thing, children with needs require special mothers! So if you are a mother (in any form) give yourself a pat on the back and know that you are doing a good job even if it's just doing the best you can at that moment. In closing, I will leave you with a verse that has hit home with me these past few days..."Even youths grow tired and weary...but those who hope in the Lord will renew their strength." Isaiah 40:30-31

A letter to my son

Dearest Michael,

When I met you for the first time, I thought about all the things I would teach you. Never did I imagine that I would be the student, and you, the teacher. You've taught me that true strength is so much more than stamina. You have every right to feel sorry for yourself, and yet you never take the opportunity to do so. You have days where you are coughing until you are blue and vomitting and you want to know how my day is going. You were sitting in a hospital bed worried about the tornado victims and felt compelled to raise money to help them. You said "I just want the world to be a better place and I want people to have a happy life." You constantly amaze me with your loving disposition, passionate spirit and gentle soul. That soul that has always been stronger than your body. You have wisdom way beyond your 7 years. There is not a day that goes by that you don't make me laugh, smile and sometimes cry with your sweet words. The day you told me that you love me all the way to God and back is still one of the days I cherish the most. Those beautiful words still echo in my heart. I have so many hopes and dreams for you. I hope that you can get new lungs, that you get to fall in love, that you get to experience the joy of having children of your own some day, I hope that you are happy but most of all, I hope that you always know how much you are loved. It is an honor and a privilege to have you call me Mommy. Thank you for all you have taught me about the world, life, love,being gracious, and giving of yourself.

Love Always,
Your Mom

P.S. I love you all the way to God and back too.

Thankful

I am doing the Facebook thing and posting what I am thankful for every day in November. It is SO hard. Not because I am not thankful for anything. The truth is, I am thankful for EVERYTHING. I spend most of my day being thankful. About a month ago, we were told that Michael's disease is progressing faster than they thought, the bacteria in his lungs is slowly taking over and it isn't resistant to anything anymore. Meaning, the only thing that is going to save him is a double lung transplant and we need to think about doing it NOW. His life expectancy has gone from 4-5 years to 2. As you can imagine, we were devastated. Why am I putting this all in a blog about being thankful? When you hear those words, "You're child has 2 years to live," all of a sudden, life is put into perspective and trivial things don't matter so much anymore. So, I am thankful for EVERY LITTLE THING. I am thankful that we have the hope of a transplant, the advancements in medical technology that may save his life, good insurance, and the fact that we are moving forward towards a cure. But what am I most thankful for? Cystic Fibrosis. Yes, you read that right. I am thankful for Cystic Fibrosis. If my kids didn't have it, I might take things for granted. I might not take EVERY opportunity to show them how much they are loved, I might get a little more angry when they make mistakes, I might not be as patient with them, I might not think about how much time I have with them, I may not ever realize how truly blessed I am. My children have taught me how fragile life really is and how important it is to live in the moment and love without reserve. For that, I am beyond thankful.

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.