Wow…what a strange turn of events we have experienced tonight! While we were in the hospital this past week we heard from several doctors that Brady seems to write his own book…he does not typically follow the “typical” historical trends of medical past. As an example, it was much more difficult to get Brady’s IV antibiotics calculated based upon the way he was responding to the antibiotics versus the way most kids respond.
Brady’s doctors and the pharmacists were having a hard time calculating the right dosages for his antibiotics because he was metabolizing the drugs very quickly but the drugs were lingering around for a while after metabolizing. The team of doctors felt they were close enough to get his levels adjusted that they could send us home and continue with the IV’s while monitoring Brady’s progress to determine the best amounts for his system. This afternoon we received the results of Brady’s bloodwork and those results led to Kellene and I making a very, very big decision for Brady. We feel we made the best decision for Brady (and for us) and the best decision for the long-term battle against CF!
We learned tonight that we had actually skipped one dose of IV’s each of the past two nights yet Brady’s bloodwork indicated he had as much antibiotic in his system as though we had given him those doses. It seems the “mistake” we made by not giving Brady those doses was probably the best mistake we could have made, but again, it left us with a huge decision to make. We had a few conference calls with the doctors while we sorted out the details and finally determined the best course of action was to have Brady’s CF doctor visit him for a full assessment before making a decision.
Do we re-admit Brady to Children’s Memorial so we can adjust the antibiotics or do we pull the PICC line and adjust our strategy for treating Brady?
This is a MAJOR shift in strategy and left Kellene and I wondering what to do and what is best for Brady…do we risk the work we had already completed for the sake of getting rid of the PICC line or do we risk Brady picking up something else by being back in the hospital, and for what? The toughest part is that we have seen Brady so happy at home and he is absolutely back to 100%, along with his blood oxygen levels and his lungs too! The main purpose for re-admitting Brady would be to get his levels figured out in an effort to eradicate Pseudomonas, which Brady has consistently cultured for 2 years. We have come to terms with the fact that Pseudomonas is here to stay and the best course of action, in our case, is to focus our efforts on keeping Pseudomonas dormant. Based upon the fact that Brady was born with meconium ileus and spent so much time in the hospital after birth, the likelihood of him beating Pseudomonas is much less likely than another CF patient without a similar background.
After much deliberation, we elected to pull the PICC line and increase Brady’s at-home care in an effort to keep Pseudomonas dormant for as long as possible. The only real difference between our new strategy and having the PICC line, is the PICC line. We are still keeping Brady isolated from play dates and germs as best we can while we stay maniacally focused on keeping his lungs clean and attacking Pseudomonas with oral antibiotics along with a combination attack of a couple different nebulized antibiotics too. Brady was happy to have his arm back tonight and especially liked being able to play in the tub without having his arm taped up in plastic to keep it dry!
Brady found a way to stump the doctors, pharmacists, specialists and everyone else responsible for developing a strategy for him. As a result, we were given the opportunity to make a decision that we will forever stand behind and we believe with 100% certainty that we made the best decision for Brady. The idea of admitting a healthy boy to the hospital during cold/flu/RSV season just for a long shot chance of eradicating a bacteria that has made it’s presence known seems like a bad idea to us. We were not convinced enough that it would be the best place for Brady under the circumstances.
So when I first thought about this post I wanted to title it “Brady wins again”, but then Kellene and I determined we will save those titles for a more appropriate time…like the Cure Found party! I continue to hear so much about the FDA approval of Kalydeco and it is extremely inspiring and exciting to hear what this is doing for everyone in the CF community. We certainly had our moments of excitement and even a bit of envy, but as I continue to realize the momentum of this breakthrough I can appreciate what it means for all those with CF and all those who continue to support CF…we have results to prove the funding is going toward a cure!
Thank you to everyone for your continued support…we are certainly not out of the woods yet, but tonight was a small little victory in a long battle of wars!
