Hello all! This can be a short update. I keep telling myself I don’t need to wait for something traumatic to happen in order to report. Right now, it is thundering outside. A rare event here in Eugene! Thunder feels like an outward expression of what could be going on within.
I did think of a metaphor for my experience with this “supposed to die and don’t and keep on living with a known deadly disease situation”. It is like when you are walking through a Halloween spook show and you expect something to jump out at you and then when the smallest thing moves you jump like way higher than is appropriate for such a small thing. I guess that is a form of hypervigilance.
Michael has not had a fever since starting the last antibiotic on Tuesday, 7/30/24. He has a good appetite and is gaining weight. He weighs more than he did in the winter before this last endless stream of infections. But some of it is water weight, swollen ankles and belly and we thought, “Oh no! Is it ascites?” (a sign of liver failure). Then we read that edema can be a side effect from the particular antibiotic that he has been on for 14 days. We breathed a sigh of relief. There are times when Michael says his stomach hurts bad. What could it mean?? Oh no!
He has gone on 3 hikes in the last 7 days, progressively farther each day. But did he push too much? Will it weaken him to where he will get another fever?
You get the idea. I’m on edge. Somewhere in here is trust and release and letting go, the opportunity to not to be hypervigilant.
We are believing to build up his immune system and to find ways to reduce UTIs and infections in the drains. We are learning a few things.
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