Friday, February 06, 2009

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

8 comments:

Anonymous said...

Thank you so much for the post. We keep praying for better days for you guys every day. I am glad to hear that overall it sounded like you guys had a pretty good visit at Duke. Keep getting stronger!!
All our love,
Crystal and Wyatt

Anonymous said...

Thank you so much for this and each and every post and for sharing your journey. We all know what a rough ride its been for you all but your grace and strength have been an inspiration to us all. When I encounter a friend or aquaintence who is facing health challenges, I always share your website and tell them your story knowing that it will inspire them in their own battle.

We are so glad to hear of the uneventful visit to the doctors and will keep praying for good news regarding the lesions.

Love the snow angels Addi! You can have as much snow from here as you want...we'd be glad to ship it to you! I bet your family in Kansas would say the same thing.

Tammy and Larry - Omaha

Anonymous said...

This was a great post-thank you so much for doing this when I suspect exhaustion has crept in! You are our only conduit to what is going on with Bo. I love you all very much-
MitchyB

Anonymous said...

Hey Guys,

Thanks for the update. Wanted to mention something to you. I am reaching my 2 year mark from transplant and am still having difficulty with fatigue. I average about a 4 hour nap everyday. It has just been that way from the beginning. My internist here has been really concerned with my iron levels and my being anemic. Duke didn't seem that concerned with it and just gave me iron supplements. I have since seen a hematologist and have gotten an iron transfusion and I am starting to notice a difference. Maybe this would help you too Bo. It may be worth looking in to if your hemoglobin is low. They think mine is low from everything the body went through and just being chronically ill. Hope that things begin to get better and happy that your breathing is getting stronger.

Best Wishes
Elizabeth McLean

Anonymous said...

Lookin' good, Bo. I have shared your story with my co-workers and even have some reading your journey here on this blog. Keep the faith and hang in there!
Rachel Kopp

Anonymous said...

Hi Bo! I am so hoping things are looking up for you! I CONTINUOULSY keep you and your family in my prayers. Just know all of your HHS family loves you and we know how strong you are! Keep that head up and know we are all sending up the prayers!
hugs-
Mellissa Huntley-Kee

Anonymous said...

Thank you, Christi for taking the time to inform all of us who care so much about any and all news. I continue to pray for good reports. I hope you do find out what will help the fatique issue. Until then, enjoy the naps. We all run way too fast in life and I sometimes wonder why. Relax and enjoy.Hugs to you three.
Love,
Kay Falandys

Anonymous said...

Christi, this was a nice blog to read. Lots of good feedback and positive develop. Jeanne T