The Path Ahead

Photo by James Wheeler on

Our ALS journey has taken a new path. On February 28th the Big He received a tracheostomy (trach) tube. Did we know it will eventually come to this, yes. Did we think it would be so soon, absolutely not. That is because sometimes we like to pretend we are making the choices on this journey, on this path that has been layed before us. With this part of the path, it was unknown to us that pneumonia would cause such havoc on the Big He’s ability to manage secretions but it did. Finding our way back to the ER was due to his inability to cough up mucus.

In late February, the Big He found himself being admitted to the ICU again. This time the conversation was immediately directed to his need of a trach. He had said he wanted one when the time came but there was still that question of would he really choose the trach or would he decide against it. The decision to get a trach is not an easy decision and one that many with ALS decide against. Everyone has their reason for opting in or out of the trach. Some choose not to get one based on the level of care that is needed, the financial impact or just not wanting to continue to live an ALS life. It is hard for sure, for everyone but there are those, like the Big He, that see the trach as another option to continue to live. The Big He just wasn’t ready for his journey to end. Many don’t have that option, but the Big He did at least for now. There may come a time where there is no choice left, and we will have to take a new path but until then, we continue to move forward.

Learning to live life with a trach has been difficult but to be honest but no more difficult then living life suffering to breathe because of too many secretions and not being able to cough them up. The Big He must now be dependent on others to ensure he is connected to his ventilator and to make sure he receives trach care to keep the trach site clean. I can tell you that the Big He is breathing better. You can see it in his face. He seems more relaxed. He seems to be sleeping better and more importantly, his anxiety over not being able to breathe is becoming more controlled. As caregiver’s we had to learn to properly clean his trach, to change his inner cannula and to suction him so he can remove secretions and breathe. While we have only been living this ALS/Trach Life for 3 short weeks, we have already become quite adept at suctioning and inner cannula changes. We too have been able to gain control over our anxiety over watching the Big He struggle to breathe. Speaking of anxiety….shout out to the makers of Xanax! Glad we have it to get us through.

Now, while things with the trach or getting better and we were released from the hospital last Friday, we did find our selves back in the ICU this past Monday. This time I was suspicious the Big He may have a UTI. He did. He also had an infection in his blood…he was septic. Yep, while we were hesitant of coming back to the hospital so soon after being released, I am glad we did. In fact, we only came back in at the direction of our VA Home Based Primary Care NP. We are grateful for her direction. The infection could have got to the point where that choice to continue this path would have been taken from us. Tonight as I write this post, the Big He is doing great. The antibiotics are doing their job. He is feeling better and has been smiling and laughing more than I have seen in many months. That alone tells me we are on the path we are supposed to be on.

The last several months have been difficult. Living weeks at a time in the ICU is stressful. Juggling my time with the Big He, trying to make time for the Little He, managing the Big He’s care both in the ICU and the VA for follow-up care has been difficult. I won’t lie either that sleeping most nights in the ICU sucks! Like sucks big time. If I am being honest, I am tired. Mentally, Emotionally and Physically. While we do have folks that want to help, at the end of the day, this journey we are on is ours. The Big He, The Little He and mine. The bulk of the caregiving is falling to me and the Big He’s VA provided caregiver. It’s the way it is. Life continues around for everyone as we struggle to make sense of this path.

We are hopeful the beginning of next week the Big He will come home. I am looking forward to being at home and being able to spend more time with the Little He and of course our four-legged family and boy and I am looking forward to sleeping in a bed and not a chair.

I am not sure what lies ahead on our journey but I do know our path has been set and we walk by faith knowing we will be taken care of no matter where this path takes us.

All my love,

The She

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