How we got here–Day Two

There’s good news and not so good news today:
The pneumonia is responding well to the meds–today they will take him off IV therapy and move him onto oral meds that he will take for the next week; the EEG showed that the seizure-like event was probably a one-time deal and likely caused by huge dehydration and drop in electrolytes/etc. He will most likely be discharged tomorrow (Monday) and come home with hopefully home-care support in the form of PT, OT and respiratory therapy for the next few weeks. He is exhausted, of course and fades in and out in terms of having the energy to talk or visit BUT he still wants to see/hear from all.

While the pneumonia is apparently under control and seems unlikely to re-surface (knock wood), the real problem continues to be his ongoing decline due to his pulmonary hypertension and sarcoid. At this point all the tests that might have shown something that could be reversed and therefore open the door to him being more like his old self and up for more activity have come back negative. What we are left with at this point is that the underlying cause for his decline is likely  neuro-muscular and while there is intervention therapy in the form of the sleep apnea device some of you already use (which he is going to definitely try starting today) –that is pretty much a next step between being on oxygen 24/7 and still not being able to catch his breath and having a breathing tube  inserted. He can also perhaps gain some tiny improvement via PT/OT but we are being told that the atrophy of the neuro-muscular structure is not something that can be reversed. We will meet with his pulmonologist tomorrow before we leave the hospital for more information — the above report comes from the internist treating the pneumonia who is consulting with his pulmonologist.

We have long known that L’s condition is chronic and incurable. He remains strong and upbeat and tells me that he has a bit of fight left in him, but we are beginning to face some tough  realities here. There’s no timeline on this thing and we continue to look for the pony in all the shit….every day is its own blessing.


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