Saturday, August 16, 2014

Home

We were able to convince the team that K would do better at home recovering. His PFTs were still not that great (45%) but I'm hoping some of that is recovering from surgery. 

Home health came tonight and got us all set up for IVs at home and feeding through his gtube. He is on a special medicine that runs 24 hours a day and has a pump (different than some of the more portable IVs we have done in the past) and he is still recovering from surgery. So, even though we are home, he will be resting and recovering and staying in. Sometimes, when we come home, he is able to jump right back into things but this time, it's a slower recovery. We have set up a hospital type setting at home to allow him to recover. BUT we are so happy to be home and he has already eaten better and enjoyed being with family (especially his sissy). We follow up with his team on Tuesday to evaluate how much longer he will be on IVs. We are so glad to be home after 12 days and a pretty big surgery. 

Thanks for the prayers and support!

Thursday, August 14, 2014

The Bright Side


Visits from volunteers
Physical therapy
Visits from famous folks (we got him an autograph and video wishing him well because he couldn't go down to see them)
Visits from the USA women's volleyball team
Visits from pet therapy
Gifts from friends

Gifts from friends 


Prayers, visits, snacks, treats, gift cards, family, friends, well wishes, coffee, great docs and staff, meals, encouragement

Thank you, we couldn't do it without you all...


Final product put together
Pokemon stuff!

T-E-N

Today, Kaleb stopped morphine and transitioned to Tylenol. He is making progress and slowly starting to get his color back. 
Emotionally, being in the hospital is difficult. The walls start closing in and boredom hits and the constant noises and lack of privacy really start to get to you. I knew today would be difficult as we got up this morning and realized how much pain K was in and the reality of all that has gone on and is going on was hitting us. I asked for encouraging scriptures from friends on FB and began to read them to K through tears this morning. I had no words of my own. I only had God's word to encourage him through this difficult time. 
The reality of this disease comes all at once sometimes. We all process it differently. We all deal with it in our own way. The hardest part of this journey as a mommy is to watch my son process and understand and deal with his CF. I cannot imagine what it must be like to be him. To deal with CF as the patient. How it must make you feel lonely and scared and vulnerable and helpless sometimes. The embarrassment of things and the questions asked and people always poking and prodding and having to look here and there and questions about how this function works and how that one works. 

I was watching the funeral of a fellow coaches wife online today. She passed away from a 2 year battle with cancer. She wasn't much older than me, has 7 kids ages 4-14 and The Lord took her home. The last two years I followed her journey and read about her struggles and her faith. Her unwavering faith. Her witness to everyone around her. Her joy despite her circumstances. Her need to share the Lord. The things people had to say about her and her testimony were amazing. 
It made me think. It made me ponder my attitude and my testimony and if I am living my life to bring God glory, all the time, despite my/our circumstances. My reflection brought discouragement as I have allowed our circumstances to consume me at times and through that, I realize that I have allowed satan to attack me in areas that have gotten me off track and discouraged and fearful. I desire to be more faithful and more focused on bringing glory to God at all times, not just when things are easy or what I want. I feel like I have such a long way to go. I pray that I can do better. 

We are waiting for Kaleb to start feeling better and then for his body to start responding to all the Meds and treatments. He has PFT's (lung function) Friday and we hope to see some improvement. We aren't sure when we get to go home yet, hoping early next week at the latest. We will be going home on IV's (not sure how long) and will start night feedings through his gtube. Praying he feels better and gets some weight on him soon that will in turn help his overall health. We are both looking forward to being back home and spending some time together as a family before school starts. 

Thank you for your prayers and support

Tuesday, August 12, 2014

Day 8 and Surgery

Surgery is over and now for recovery. K has 9 incisions from today all over his chest and abdomen, so he is obviously hurting.
We have PFT's scheduled for Friday, so that means as of right now, we are here at least that long. 
How he does over the next few days and how his lungs recover will determine when we go home. They have told us he will go home on IV's as well.
We will be getting a visit from home health and some new equipment after we get home too for his gtube supplies. 
Please continue to pray for healing and recovery.