A Lundstedt Surprise

GREAT DAY! We all said after the doctor's visit that we were apprehensive about how the visit was going to go--were we surprised! Our doctor today was a specialist in respiration--Dr. Benditt at the UW. First, he was early! He was accompanied by his nurse and his assistant, Louie, who we met with last week. Kemp and Kylisa were with us. Next, he was so real--that's been our impression of all the UW doctors and specialists we have met--these people are tops in their field and they genuinely care--that was Tom's comment when we left today--they care and they listen!

After examining Tom, Dr B talked to us about his findings--he was surprised by Tom's strength in his arms and legs. The disease has really focused on the throat area and because of that he is a good candidate for a relatively new surgical procedure where they separate the wind pipe and the esophagus. This is to prevent choking and aspirating fluid into the lungs. He said that Tom could potentially even put food in his mouth--swallow it or not--since there wouldn't be any danger of choking on it or aspirating. (Kemp immediately piped up that crabbing season is right around the corner!) After discussing it we all agreed that seeing this new doctor was the next step.

We are also being referred to a gastroenterologist (and to think that 2 months ago I couldn't spell OR pronounce it) at the UW. We have really slipped through the cracks because Tom's tube was put in by hospital doctors so no one really claims responsibility for caring for the tube and I have had to be very persistent to get help with it. We are very confident that once we get a UW doc we'll be able to get the help we need. Yesterday the triage nurse at the gastro dr office we had been to before told me that I should loosen the disc around the tube myself! Are they kidding me?! I've never been shown how to do that and after trying briefly I know that's one thing I'm not making up. I feel like I've gotten a degreen in pharmacology--the gastro stuff I'm leaving to the experts!

We went into the appointment thinking about end of life decisions that need to be made. We left thinking we have a whole lot more living to do!!!!! I know we walked out with much more spring in our step.

Tom came up with a new definition for ALS tonight---A Lundstedt Surprise! I like it. The doctors agree that ALS is not attacking Tom as would be expected. We just think it's because of his Viking blood! He's tough. And I am thankful for that and for his sense of humor--oh, how he likes to make people laugh!