The ALS journey can be ever changing, always progressing. Over the last 7 days, our ALS journey has put us in the ICU. The Big He had what we thought was just bad allergies causing lots of drainage/secretions which we were trying to stay on top of. Tuesday a week ago, we made the decision to head to ER as things were just not getting better. We learned the Big He had a mucus plug along with pneumonia. We later learned that tests showed he actually had the common cold. Needless to say, the big he was admitted to the ICU. He was able to pass the mucus plug, the pneumonia seems to have cleared but we are left with a very worn out Big He. The toll that the cold took on him is tremendous. Is there recovery? There is but returning to his pre-cold self regarding energy and abilities…not sure.
This has been an emotional rollercoaster watching him the past week culminating with an all out episode of losing my shit on Friday/Saturday. The word “trach” was being introduced to us as the best avenue moving forward for the Big He. I actually said the phrase, Fu$kity, Fu$k, Fu$k, to the doctor. Seriously, that is not me keeping my shit together. The decision to place a trach is such a personal one for the PAL and their family. I have reached out to other PALs that have chosen the Trach to here about their journey and on their decision. We have watched the amazing, fulfilling lives that PALS with Trachs have with the use of all the new technology available.
The Big He is slowly improving. Meds to keep him calm/relaxed or being lowered. His ability to tolerate time off his non-invasive ventilation has begun which is a positive step forward and last night he actually slept most of the night (which ment I slept too). I am anxiously waiting for the Doctor to arrive this morning to talk with us about the plan moving forward. Will surgery to place a Trach occur this week? Will he be given a few more days to see if he can recover more and we can postpone the surgery for a little bit longer?
I will update the blog once we know how we are moving forward and give a status of the Big He.
To our family and friends that have not just supported us but wrapped us up in love and kept us going I can’t thank you enough. Tom’s amazing caregiver, Amanda, has been a lifesaver to us ensuring the Little He is being taken care of so I can stay with the Big He.
For those of you who are just finding out about this please add our family to your prayers.
All my love,