Thursday, October 30, 2014

Update 10/30/2014

My virus swab came back negative. Great news. Now I can visit dalton again. And were both negative for the virus. 
Bad news is that there is something else going on in my body. They have upped my steroids and they have switched around my antibiotics. I haven't been awake for more than 2 or 3 consecutive hours since Sunday and I have only ate a couple of things here and there. 
Dalton almost had lungs last Friday. He was the first on the list but before anything could happen, they went bad. The surgeon and our CF doctor, Dr. Pilewski had been called. He is wearing his bipap a lot more lately. This will increase his LAS (lung allocation score- find out more athttp://en.m.wikipedia.org/wiki/Lung_allocation_score
These things are definitely taking time but with Gods grace and our will to live together and get every ounce of love into our marriage, we will come out stronger than ever. It's a promise. 
I got to visit him for the first time today in about a week and it was the most precious time spent that I could have asked for. 
Thank you for all of your support and prayers. It means more than you will ever know. We aren't going down without a fight. Please just pray, pray, pray.
Love, Katie






Monday, October 13, 2014

Gross

If you hate reading about gross stuff, stop reading now. 

With CF, it's common to have bowel blockages and constipation. Today I have been experiencing some discomfort but tonight it hit me like a ton of bricks. I have drank so much miralax today but it didn't help. Doctor also thinks I have c. diff. So, we will see. They sent off a sample to be tested. 
In about 5 minutes I'll be getting an enema.. I hate these things! Don't worry, I'll post tons of enema selfies!!! Hahahaha just kidding! (I had to lighten the mood somehow)! -Katie

Here is a pic of my distended belly. 



Thursday, October 2, 2014

Dalton

All we need are prayers. No amount of money, no size of house, and no type of car will ever be more precious to me than the love I have for my husband. Please please pray. Please pray for peace. Pray for healing. Don't pray that someone dies so that he can get his lungs, but pray that the one God chooses to take home with him makes the choice to donate their organs. I have faith that their coming and for Dalton's sake, I hope they do. Tears are falling as I type this as they have been doing most of my waking hours the past few days. We need a miracle. -Katie

Wednesday, October 1, 2014

Pray

Been a rough emotional day here. It's hard enough having one end stage CF patients, let alone two. It's hard to focus on me when all I care about and want to focus on is Dalton. Please pray for us. For peace, so that our minds will stop racing. For wisdom, to make all the right choices when it comes to both of our health. For time, the most precious thing of all. We need more time. More time together. More time of loving. More time for cuddling. More time for being each other's best friend. More time for laughter. We refuse to stop fighting for ourselves and for one another. Please pray. -Katie