Hello I'm Tanner. Blessed to be the mother to R, friend to many, follower of Christ, and advocate for Cystic Fibrosis. Roanan was diagnosed at 4 weeks with Cystic Fibrosis. This blog is our journey battling CF and trusting God through it all.
After we were placed in our room yesterday we spoke with numerous doctors, nurses, specialist, and etc. The staff here is really kind and informative. Last night a respiratory therapist came and did CPT along with both of our usual treatments. (Hypersal and albuterol) at home that take 40ish minutes to complete, here total like 14. Same medicine but different nebulizer cup and the air here is so strong it pumps out the meds super fast. I was blown away! (Pun intended) At this point R was still pretty much still knocked out. Around every 10 minutes he would try to rip out his feeding tube. We would call the nurse, feed it back down his nose, and retape it to his face. He was miserable. After around 20x of this repetition we noticed blood and foggy mucus pouring out the end of the tube onto my pants. Mom mode kicked in and after Seth and I weighed the pro's and con's we agreed we wanted it out. We knew the mucus and blood coming out was not normal and that R would be repeating the vicious cycle. The nurses were concerned as well and before we removed the tube we did an x-Ray to check the tube placement... NOT EVEN IN THE STOMACH. Thank you Lord for a gut feeling. I knew something was off and so did Roanan, before the nurse could come back with the supplies to remove the tube he pulled it out himself along with the IV in his foot. Blood and boogers covered him and me. Needless to say that was an intense 10 seconds. He did very well removing his own IV, it was a smooth removal with lots of blood and few tears! We then started to run his meds through the broviac. It looks good, mild bruising but nothing to be worried about. He is currently on his second bag of antibiotics. About the feeding tube failure. We will be trying some different things to add calories. They are still up in the air on that topic. We talk to a dietician tomorrow to set up our plan. Doc also informed us we are here for a minimum 21 days. Right now Roanan is sleeping great. After he removed the unnecessary equipment he was back to his old self. Smiling and enjoying his froggy toy. Shew, it was wonderful to see that side again. Before the removal we had to hold him down as he cried. All he wanted to do was rip out that tube in his nose. It was heart breaking... For now we are doing great!
Psalms 106:1 Praise ye the LORD. O give thanks unto the LORD; for he is good: for his mercy endureth for ever