Friday, September 13, 2013

September 13, 2013

Tests are done, the tube is out and we are excited to be heading home at last!!!

Thursday, September 12, 2013

Tuesday, September 10, 2013

September 10, 2013


Tomorrow, Kadyn will have a CT scan of her sinuses and lungs. She will also get to practice PFT's. Pulmonary function tests (PFTs) are noninvasive diagnostic tests that provide feedback about the function of the lungs. People with CF usually start this test when they are 5, but Kadyn's doctors feel it would be a good idea to start practicing. Thursday, they will test Kadyn for reflux. This test requires a smaller version of the dreaded NG tube to be inserted in Kadyn's nose down to her stomach and left for 24 hours. She will have to eat while the tube is in for the test to work accurately. As we know, this is what Kadyn "hates the most". We are not sure she will talk, let alone eat, in that 24 hours. But, if there is a possibility that she has reflux and is aspirating into her lungs we really need to know so we can start treating it. Please pray for comfort and ease during the next few days. If all goes well, the plan is to go home on Friday!

Again, we continue to be overwhelmed with the support, prayers and love we have received. God and our Krew are what get us through these particularly hard times.

We love and appreciate you all so much!

Monday, September 2, 2013

Here we are again...


It has been very difficult for me to write this update. I've tried and failed several times. For one, it is hard to believe Kadyn is back in the hospital and we are going to be here at least two weeks. Another reason is when I write things down they set in a little harder and become more of a reality. I truly cannot remember the last time I thought Kadyn felt 100%. We got home from the hospital in May and have been on a roller coaster ever since. An antibiotics 6 out of 13 weeks roller coaster. Thankfully, it is summer and we have been able to distract ourselves and have a lot of fun! There were lots of laughs and smiles, but as a mom there was constant worry. I decided to push back the "what if's" and let Kadyn play as hard and long as she physically could. I knew that when it was too much for her she would rest. I knew that when those rest times became more frequent I would have my answer and it would be time for intervention.

Once I finally saw the exhaustion take over playtime, my heart sank. We had so many fun things coming up and I couldn't believe that this disgusting, bully of a disease was going to ruin them for Kadyn (and Koy). Luckily, Koy and Kadyn were able to go to their first day of "tutoring" with Ms. Abby and attend their first day of preschool. However, we missed Labor Day weekend at the lake with close and extended family and will miss a trip to the beach. Since we really don't know when Kadyn will be cleared to go home... Heartbroken, we postponed our family trip to Florida planned to start September 7th. I haven't had the heart to tell her, and when she says things like "after Columbia we are going to be so much closer to going to the beach! I will really need to burn some energy. I am SO excited!" my heart breaks a little more.

These things may seem insignificant to some people, but to a 4 year old they mean everything.

Cystic Fibrosis is a devastating disease. It does not care how old you are or what you have planned. It knows that even the strongest most positive spirits do not stand a chance against it.

Anyone who saw Kadyn this summer probably had no idea there was a war raging inside her little body. How could they? Seeing her incredibly large smile or hearing her contagious belly laugh, you'd never know every breath was a struggle.

We know we are dealing with a couple of components. Kadyn's compressed airway does not allow much more than air to move through. When you have CF and your mucus is extremely thick this is a very big problem. We have added a new treatment (in addition to her nebulizers and vest) called IPV. This seems to be helping already. So far, Kadyn is not culturing any new bacterias. However, she recently cultured, and has been on treatment for, a bacteria that could have caused the excess amount of mucus in her airways and lungs. Once Kadyn's cough is better they would like to get a CT scan of her sinuses and lungs. They may also test for reflux to make sure she is not aspirating into her lungs.

Right now, I am sitting here watching Kadyn sleep. I cannot believe she has endured so much this year. There is no way to get through any of this without a strong faith. Mostly, because there is no way to understand why such a little princess would have to fight like such a warrior on a daily basis. But, she does! Kadyn wakes up smiling EVERYday. She does exactly what she is supposed to do and she does it all like a true champion. We are all in constant awe of her strength, maturity, positive spirit, sense of humor, and grace.

Your continued prayers, love, and support also keep us going. We are going to fight and will not give up until we win...thank you for fighting with us!
We love and appreciate you all so much!