Hello All, Lita here reporting in:
We moved Bruce’s surgery up to the 3rd of December due to some swallowing issues. Actually he had 2 separate surgeries, the Tracheostomy and the PEG tube. He spent a week in ICU and is home now recovering nicely. I began taking care of the Tracheostomy and PEG feedings in the hospital so I would be up to speed when we got home. Things are going well and we are looking forward to getting back out into the world! We are both so thrilled that the mask interface is gone and now Bruce’s face is healing well from 5 months of 24 hours a day wearing it. Hs ventilator has been updated to accommodate the Trach and he is breathing well. I am happy to say that he is putting weight on after reaching a low of 141 pounds, a loss of almost 90 pounds due to ALS. Tube feeding makes it very easy to make sure he is getting proper nutrition. Bruce has a new email address for his new computer system. It is firstname.lastname@example.org for those of you that wish to communicate with him directly. He is also on Twitter now @arthurbeesmith.
Our Cabana boy, Scott was here through most of the hospitalization and Nurse Tain (our “house” boy) was on hand for his first several days at home. We so appreciate this! Thanks for all you guys do! We are always so sad when you leave, but we know that you will return soon.
Bruce will have the Trach changed in mid January to a smaller size that will hopefully allow him to speak better and maybe even eat a little of his favorite foods. We missed our annual anniversary (22 years this year) dinner at Flemings this year on December 14. We are definitely going to make up for that asap. 🙂
We celebrated Thanksgiving here at home with all of the kids and Dad and Pat. Dad and Pat cooked the entire dinner and brought it over, it was a great day! Thank you. Meg wooed us will an awesome homemade apple pie. I had help from Tank decorating this year, so I was able to get it all done prior to thanksgiving. Thanks!
We are continuing to adapt and learn as we go, very thankful that we have all of the options that we have. Most people with ALS do not have proper resources to continue to live their lives affected by ALS and unfortunately make the final transition sooner than they may want to. We have the resources and ability to go on for a very long time. Bruce will be around for us to harass a very long, long time 🙂 and for that we are most thankful. He has been dealt a hand that no one should have to play and he is handling it with courage and a sense of humor. Yayy Bruce!
Happy Holidays to all…….Until next time.
Continuing to enjoy every sunrise………