- Apr 14, 2019
Unfortunately despite having a feeding tube surgery scheduled for tomorrow, my PALS ended up in hospital last week due to a variety of complications. Since then, she’s deteriorated rapidly and today had to be intubated due to oxygen levels crashing following a pneumonia diagnosis. I wasn’t there as I’d gone home after a very long stay, but our main caregiver was and described the situation to me in detail. It was only on Monday that the medical staff raised the issue of a trach, asking for our views. Even yesterday the consultant neurologist literally said to me the decision wasn’t required in the next day or so, but likely by the end of the week. Before all of this, my PALS and I had had discussions in which she expressed a preference for a trach, though without knowing all of what we learned on Monday. (For example that as a trach doesn’t stop ALS progression and my PALS has already lost all limb function and swallowing, they can’t rule out the eyes being impacted.) In addition we live outside our home country and did not know there was no support offered. That gave pause for thought but with only one day between the conversation and now, we didn’t re-explore it. Now I’m hoping the intubation is successful and we have a little time. But it’s all brutal and we don’t have firm plans or thoughts. I’ve looked up some trach posts here but people seem to have experience earlier in the process. At such an advanced stage of the disease I’m not sure there is much experience...is there?