Monday, May 19, 2014

CF Rantings

 Here is my little girl today....home sick from school again.
Day 4,  barely well enough to stay awake more than a couple of hours at a time. 
 She cries and moans in her sleep and while she is awake. She goes from extreme hot and sweaty to shivering and freezing. Many people think that CF only affects the lungs....this is far from true. As of today her lungs are fairly healthy but the rest of her body is working hard to function and feel better.  When people ask how she is we say she is good, because compared to other kids her age with CF she really is doing well.  But as a mother, I see how hard her little body works to function 'normally.'   The crying in her sleep and the coughing fits will always scare the hell out of me.  Over the past few months I have caught myself getting very anxious...especially during the nights. I never really understood anxiety, but lately I have felt it first hand.   I hate to admit the weakness, but I also often have flashbacks of Charlton. Nights were always the worst, my lack of sleep doesn't help either.

This is her last week of Kindergarten...where she has worked hard to not only stay well, but to be among the top students in her class. She is missing at least today, and probably tomorrow, she really wants to make it back at least once to say good-bye to her classmates, friends, and teachers for the summer.
 She is growing so much, and so fast.  As we were reading scriptures last night, she nearly completed her verse all on her own.  Saturday morning, Ben took Holdyn to a Stake Primary Choir practice and had taken Cody with him.  Kimber and I were home snuggling on the couch after another very restless night.  She was fighting back tears because of the pain and discomfort she was in.  She turned to me and said, "Mommy, can we say a prayer."  My heart melted and I fought back tears of my own.  She then proceeded to say one of the most precious, pure hearted prayers I have ever heard.  She asked for help letting others know about Jesus.  She was thankful for her family.  She paused as she thought about how to ask Heavenly Father to help her feel better.  The faith of children will never cease to amaze me.  She simply asked for God's help in helping her feel better, then confidently closed her prayer knowing she would get Heavenly Father's help.
Treatments have become such a fundamental part of our family's life that I have forgotten how simple life seems without them. We haven't done a complete session in a couple of days because of the pain she seems to be in.  I took a picture of her machine as I turned it on this morning to see that Kimber has sat at her vest machine and done 1209.4 hours worth of therapy. WOW!  That is over 50-days worth of chest physiotherapy with this machine. 
This picture of Holdyn and Kimber was taken shortly after Kimber was diagnosed.  I still remember the feeling of being kicked in the stomach....not being able to breathe and going completely numb when Ben called with the unofficial results from a test she was having done in St. George.
We were packed and on our way to Primary Children's shortly after that....and life hasn't been the same since.    I get teary thinking to much about it...I guess that is why I just keep myself busy, and don't think about it.  There are also other dynamics in this disease that get my blood pumping.  It isn't enough to have a 5 year old who needs to sit for an hour a day doing chest therapy (First thing in the morning and before she goes to bed), and take pills out the wazoo. This is just to function 'normally.' If she gets really sick it is much worse!   Luckily, her school is great about getting her enzymes when she gets snacks and lunch.  However, it has happened more than once that they were on a field trip and the enzymes were forgotten at the school.  Leaving Kimber to watch as others ate snacks and then having hers alone after they returned to the school.  
 I am on the phone nearly every other day with insurance and drug companies trying to get the CF medications needed for any regular day.  I will never forget Charlton's mother, Helen, telling me that insurance companies were one of hardest battles she had to fight....I am beginning to understand.  I spent over 4 hours on hold one day last week, being transferred, thinking it was taken care of only to get another late bill in the mailbox the next day.  Back on the phone again.
This is definitely a family disease.  Holdyn is truly an angel in our home.  She often will help Kimber get situated, find a game or a TV show or something to do while the vest is going.  
The Great Strides walk is one of Kimber and Holdyn's favorite things about Cystic Fibrosis.  
Kimber loves the t-shirts and the attention.  She is still young and understanding her body and disease pretty well, but there is so much for all of us to still learn. 

Well, I had better wrap this up, she is waking up from a little sleep and sounds like she needs some snuggle time.  Perfect timing because I need it to.

**Update....we just got home from the Dr's.  Poor girl has scarlet fever :(  She had a shot of penicillin in the leg....lets hope this kicks it.  Poor girl!   She is so sad she is missing 'Play/Water Day' at school tomorrow!   She is supposed to be through the contagious stage after 24 hours of starting the penicillin....I hope she feels well enough to at least go for a short visit to the school on Thurs to say goodbye to her friends!**

1 comment:

  1. Scarlet Fever?! that's the saddest thing ever that she is missing all her final days of kindergarten :( i hope that the medicine will start working FAST so she can get better! we love you guys. and will be praying for her to get well so she can say goodbye to her friends.