I had someone ask me how my Friday is going. I find myself reflecting over the past seven weeks. Yep, seven weeks we have been in the hospital. Brian K. Johnson and I never imagined end stages of Cystic Fibrosis playing out like this. I have seen him struggle for each breath to finally being able to breathe (with assistance). I have seen him not be able to get out of the bed and sleep all day to being able to not only get out of bed but also be able sit in a chair and even walk laps around the unit. I have seen him be under complete sedation with a breathing tube down his throat to coming out of sedation with a trache. I have seen him not be able to remember things that happened within the day due to meds or high co2 levels but know that he always remembers his one, true constant, Me. I have seen the anxiety of getting a much needed feeding tube placed, only to see it pop out, then be replaced, then pop out and be replaced. I have seen his weight at 93 lbs and now it is 108. Ive learned to watch his body language to know what he needs. Ive learned to ask doctors and nurses questions because yes, they need accountability and make mistakes. Ive learned to fight by his side and for him when he cannot. Ive been strong for him and Ive been cradled in his arms with tears streaming. But, at the end of these seven weeks, I still have him by my side. God still has a plan for him. And Brian still has many dreams to live out. Thank you all for continuing to pray for us and support us on this journey to transplant!!!
Posted on: Sat, 23 Aug 2014 02:23:59 +0000
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