Good Morning - sorry yesterday was a long day. Finally we had an uneventful trip to visit with the Doctors. We started off by dropping Addi off at her friend Maddie's house for the day, at 7:00 am, thank you Robin and Brian. Then off we drive. We got there around 9:30, did the standard blood tests, chest x-ray, and PFT's (pulmonary function tests aka how well the lungs are working) Bo's PFT's were up, so he is breathing stronger and stronger everyday. Then we went to visit our friends at the Center for Living, where Bo did rehab, and they reassessed him. Everyone is trying to figure out and conquer Bo's fatigue levels. Surprising or not surprising Bo performed better than when he left, Thanks to Dave the trainer. He is at 80% of a "normal" healthy person. Still no answers to fatigue. Then we wait...Duke time.
We got in to see Dr. Palmer and he reiterated what the nurses that performed the previous tests said, that Bo is getting stronger. He touched base a little bit about the lesions on Bo's brain, he is really letting Dr. Crawford take the lead on that one and he will work with him depending an what Dr. Crawford finds and assesses. (What great teamwork and we are so glad we found Dr.'s that are not afraid to check their egos - Neither one of them have an ego (rare).) Side note - Dr. Crawford was listed in the top 5% of Oncologists people would want to treat them, we sure got lucky meeting him and Susan.
Dr. Palmer spent a lot of time talking with us about Bo's fatigue level and trying to figure out what might be causing it and what might help it. He has admitted to us that this might be something they will never find the cause for, but the will always try to make Bo feel better. He has admitted that Bo is one of the few patients that have survived the type of complications he has and he (and the medical field) are unsure of what neurological complications could have occurred when Bo was surviving on ECMO. It is possible that Bo suffered complications from ECMO, the lesions could be suppressing his activity level, all the medicines Bo has taken at different times could still be filtering in his body. He does believe that with time Bo will get stronger until then he is going to do all the he can safely do medically to help Bo along. So we are tweaking more medicines, adding some, cutting back on more and trying this for a little bit. In 6 weeks we go for another biopsy of the lungs and hopefully we will keep getting great results. We are also going to revisit with ENT (Ear, Nose and Throat) to look at Bo's vocal cords. He has been coughing a little more, could be due to weather and I cannot get him to wear a coat, but just to double check nothing is sneaking down the wrong pipe making him cough. Remember though we are visiting Dr. Crawford in 4 weeks for another MRI of the brain, someone has to check is still has one in there...just kidding, we hope and pray those spots are not changing or they could just leave for as far as I am concerned.
Sorry the post was so long, but I wanted to try and explain where we are now, where we are headed and how grateful we are for having you all along with us on this journey. I think forgot to mention that before, so I thought I would sneak that one in there.
Take care and love to All
Christi, Bo and Addi