Friday, July 12, 2013
The ugly truth
Michael had a partially collapsed lung, spent one night in the PICU and two weeks total in-patient. This was after he spent almost the whole month of May in the hospital. He has had increased exacerbations, lower pfts, lower sats, increased hospitalizations, has been needing more support from antibiotics and oxygen, had a pneumothorax and is struggling more to breathe. The doctors told me that this is what happens when a person enters the end stage or terminal phase of the disease. Michael needs to be activated on the transplant list. We are awaiting word from his transplant team in Pittsburgh as to when they are going to list him and what his LAS (lung allocation score) is going to be. His LAS will determine where he is on the list. I'm assuming he will be pretty low on the list to begin with but may get bumped up as we see how this plays out. Once a CF patient has a pneumothorax, it's possible it could keep happening. If that happens with Michael, it will increase his LAS and move him up on the list. It's also possible that it never happens again but either way, Michael is (as the doctors put it) desperately ill. Each lung collapse is a life-threatening event. So here we are. A place we had hoped we would never be. A place we had hoped the doctors were wrong about. A place we naievly thought we'd be prepared for. We can no longer fool ourselves into thinking that Michael will prove them wrong. We can no longer pretend it won't or couldn't happen because it is. We have had the rug pulled out from under us in an instant. Our journey from here on is into the unknown and it is terrifying. We are going to be faced with many, many tough decisions along the way. Decisions no parent should ever have to make for their child. I was SO scared about making those decisions because I don't want to make a wrong one. You can only be wrong one time with this and it could be fatal. But then I got to thinking and I believe if all our decisions are based on what's best for Michael and our love for him how can we make a wrong one? So I am a little more at peace now. Michael is ready. He knows his body is failing him. He is scared but excited to see what life looks like on the other side of transplant. He's ready to be able to run, play, do karate, swim and just breathe. He wants to experience life outside of a hospital room, without being strapped to an oxygen tank, without being hooked up to a feeding tube 20 hours a day. He is looking forward and I should take my cue from him and look forward too. It's going to be a hard road getting there but we will. I HAVE to believe that because I just can't face the alternative. I wasn't going to make this public until we heard from Pittsburgh and we (as a family) needed some time to process it but everyone has been so supportive offering up so many prayers and so many kind words that I felt that I needed to share. You may share in my sorrow but please do not feel sorry for me. I love Michael beyond words and I feel blessed to be the one chosen to walk this path with him. I would do it a million times over if I had to. Please continue the prayers for my son's health, our strength and wisdom, and for successful outcomes.