This week can best be described as a roller coaster ride. There were highs, lows,
fast turns and moments we lost our breath. For several weeks now, the Big He has been having some increased problems with breathing. Last Sunday, he had serious problems and nothing we did helped. So, we called 911. Yep, ALS has progressed to the point that we needed emergency help. Fire Department and an ambulance parked in front of our home. The Little He, kept his wits about him and alerted our neighbor we would need him to drive our car with the wheelchair to the hospital later. He stayed with the animals, he was scared but what kid wouldn’t be. We spent about four hours in the ER Sunday before being discharged. No infection. Blood work came back good. X-ray did not show any issues. So what was wrong…ALS. For the Big He, he has experienced quite a bit of progression in his breathing. He is still somewhat mobile, he still eats on his own, he can still talk but he finds it hard to breath. We had his RT visit us on Monday and make changes to his ventilator settings. Later in the week we finally were able to meet with our VA Pulmonolgist. He had more blood work but this was to specifically check his blood gasses. Those looked great but it was because he was on his Bipap for the blood draw. So again, what was wrong…again it’s ALS. The Big He is experiencing “air hunger”. For those with asthma, you know this feeling. While I have never experienced it, watching my husband go through with this was incredibly hard. My heart ached for him. Watching someone you love so much go through this is at times-well it is something I don’t wish on anyone. He is doing much better today. We are keeping a close eye on him. Needless to say, it was a long week.
This is ALS. It is a roller coaster ride for sure. This ride will continue and I know the drop off’s will be steeper and go much lower than we want. If I could have one wish, my wish would be the ride ends with a cure. Something to stop the progression, something that will give the Big He his life and his body back. Something that will give so many families their loved one’s back to the life before the disease. ALS is ugly. ALS is cruel.
We are one week away from participating in our third ALS Walk in Austin, TX. We walk for the Big He and for all those wonderful, amazing folks that fight this disease every second of every day.
If you can help, we ask that you do. Little donations add up to help make big discoveries. You can donate to our walk benefiting the ALSA of Texas
All my love,