CF sucks, but I need to be positive

I have been feeling depressed recently. I feel like when Jace first got his diagnosis I just pushed through the pain to do whatever it took to make sure Jace was getting all his medicines and making sure he was doing okay. Now he is 5 months old and I feel like his diagnosis has hit me with a ton of bricks. I didn't know how complicated CF is when we first got diagnosed. This disease is life-threatening and scary. Is my son going to die before me? possibly. That fact sucks and hurts so bad. My friend described it perfectly the other day. It felt like as soon as Jace got the diagnosis a timer started and it keeps clicking in my ear reminding me of the time I have left and that I need to make the time meaningful and wonderful. I know I need to stop thinking about it though and start thinking about positive things that are going on with CF. Like I get to wake up every morning and be grateful I get another day with my son!

Yesterday I took Jace to the doctor because he kept pulling on his ear and he hasn't been sleeping well. The doctor said that everything looked fine, but I am just so scared because everyone keeps telling me that as soon as he gets a little sick I have to put him on antibiotics to make sure he doesn't get sicker because it can go from bad to worse in a split second. I don't want my son to have to go to the hospital. The first time we are there I know I am going to have a super hard time! I am trying to avoid the hospital for as long as I can!

Jace is such a sweet and special boy full of love and happiness. I hate that he has to go through this, but I will do whatever I can for him to make it less hellish.

Sleeping

Jace has slept through the night since 5 weeks old! We have been so blessed with such a good baby! Lately though he decided to go to sleep later and later. We tried to let him cry in his crib in 5 min increments with me going in to calm him down in his crib. He did really well with that, but I didn't. I have the hardest time letting Jace cry. He is the best baby ever and to hear him cry makes me cry.
This is hard that I can't hear him cry, because sometimes I have to let him cry so that I can do his treatment. It is the hardest thing ever! I hate that I have to let Jace cry sometimes for his own good. Why does it break my heart so much?  I just want him to love his treatments, but I know that's almost impossible. The only way I will do his therapies now is if he is asleep in my arms. I hate that I have to do this to him, but know it's for his best. I love him so much and hope his life gets easier. I hate that he has to have cystic fibrosis and I would do anything to take it away from him!!!

life sentence

When we first got the diagnosis of cystic fibrosis I felt like my son was getting a life sentence. I still sometimes have these moments and they hurt. I would do anything to take away his pain, his struggles, his tears! As a parent it is the hardest thing to watch your child suffer. I know this is just the start of that suffering for him, but I will be there for him the whole time!!!
Jace is gaining weight and looks like a super healthy, happy 5 month old. You would never look at him and see cystic fibrosis. That is a good thing and a bad thing. I love my son more than anything and will continue to give him all the medication the doctors tell me to.
I don't want this to be a life sentence and so I will do everything in my power to give him a long life!! I do get depressed sometimes though when I read or hear stories of other children dying before age 25. It makes me so sad! I am scared for the future, but it is looking bright with recent medications to help make his life longer. I will continue to update this blog on our life as we face these trials.
I want people to understand cystic fibrosis because knowledge is power. I still learn new things everyday about this complex disorder.
Jace is my hero and I feel like he is going to be just fine, but the fear of loosing him is scary.

Many doctors

After our first appointment we learned that we had to go back up to Primary Children's at least once a month for a routine check up. We also needed to continue to go to our primary pediatrician to make sure he was getting his vaccines and hitting all of his milestones. I'm pretty sure we have been to the doctors office over 15 times and my son is only 5 months.

We also go to the pharmacy multiple times a month. We do Chest physical therapy 2 times a day and pulmozyme 1 time a day. These past 5 months have been hard. These few pictures just show a small amount of what we go through in a day. It is not easy, but it is worth it for him to have healthy strong lungs. I don't get out of the house much because I don't want Jace to get sick. It is really hard to go to church and see other cute babies out of the house, but I know it's for his safety.

October 17, 2014

Our first doctor appointment!

I was ready to go and have some questions answered, but I wasn't as ready as I thought I was.

It was a four hour appointment talking to doctor after doctor trying to get as much information in as possible. Jared and I went home emotionally wiped out.

I honestly don't even want to write about it because it was so draining and just so much, but the main points were that Jace had to start taking enzymes before every meal. So we had to get him on a schedule because he could only have a certain amount of enzymes everyday. We had to watch how much he was eating and we had to give him a bottle at least twice a day with formula added to it so that he could gain weight. We learned that he was having a hard time gaining weight and that he would for the rest of his life. We also had to start giving him vitamins everyday (they are gross and orange, they are my least favorite part of the day).

We also learned that he would soon need more lung exercises to help his lungs develop. Also he needed miralax added to his bottle because he would need to poop once a day at least to keep the mucus loose in his bowels, because they could get stuck in there and clog his system.

Sweat Test

Jared was able to take work off the next week after we got the call and we went up to Primary Children's hospital and got the sweat test done. It was horrible to watch Jace cry during the test. They put these metal bands around their arms and have these electroids on them to catch the sweat to see how much salt was in the sweat.
*People with CF sweat out salt more than the average person so this test is done to see how much salt they produce.
Jace's numbers came back later that day as super high and that he for certain had cystic fibrosis. I got a call at like 4pm from the Cystic fibrosis doctor up at primary children's hospital saying that we needed to get him in right away! So we scheduled an appointment for that Friday.  

This picture isn't Jace - I didn't get a picture while Jace got his done. I was standing next to him holding his binky and giving him "sweeties" (sugar water).

The Call

Jace was 2 1/2 weeks old when we got the first call.
I remember it like it was yesterday. I was in the care driving home from Target when my phone rang and it was my doctor. He said "Since Jace's results have come back positive for cystic fibrosis you need to schedule an appointment with Primary Children's to go get a sweat test, and a genetic test done." My mouth dropped. Wait what?? my son has cystic fibrosis. What is this? are you sure? what is happening? My mind went back to what I remembered reading about CF when it came up 6 weeks prior to this conversation. I couldn't remember anything except it is genetic. I then said to the doctor "Are you sure". He then stopped and said "Oh my gosh I am so sorry I thought someone from the state already called you to tell you. I would've been more gentle. I am so sorry." I was so confused. I then thought to myself. You would've been more gentle? Is this a big deal? What is going on!!!
After I got off the phone I walked inside and started crying. I told Jared and my mom what the doctor said and we all got on the internet right away and started researching it.
I grabbed Jace and hugged him and kissed him all over. I wanted to take it away, I wanted it to not be real.

 

How could this small, sweet little boy be sick?? 

I talked to the nurse from the state later that day and I said "Well these results don't mean that he for sure has CF right? It just means that he might have CF?" She then told me that with numbers like his he most likely had CF. She had never not seen numbers this high come back not positive. I was devastated. She took away all my hope that Jace might be ok. 

(looking back I am so glad that she didn't give me hope!! I am so grateful for her!!!)