His infectious disease doctor (her name is Dr. Moran) spoke with me this morning with the following information: he has tested positive for c-diff; his EEG yesterday confirmed it is a brain-wide metabolic issue (whatever that means); his fever was 103.1F and he was headed for a CT scan. That was all before 8am.
By 12pm his fever was gone, and stable at 97.8F or so. His HR was down by 20 beats/min once his fever ebbed. He was more responsive so they cancelled his CT (for now).
His sodium has been bouncing from 123 to 158 in the past 24 hours, and we want 135 – 145. Either side of the normal range will cause his responsiveness to diminish among other non-favorable things. That battle is on-going. It is a bit of a dance in that fluids leave behind sodium when they leave the body. If you try to hang on to fluids to dilute the sodium, edema (swelling/water retention) results. We don’t want fluid retention because that could increase pressure on the brain. But when the body turns loose of the fluids, it leaves the sodium behind again. His brain is simply not cooperating as it should, to maintain the appropriate chemistry right now. Such a delicate system. Maybe that’s what Dr. Moran meant by “brain-wide metabolic issue”.
C-diff is a bacterium in the gut or colon that commonly affects people on long-term antibiotics. (Clostridium difficile (klos-TRID-e-uhm dif-uh-SEEL)) It’s pretty contagious, so we are gowning-up and wearing gloves to hang out with him. It’s not air-born, so no masks. He is being treated for that as well, and is likely the source of the fever.
I know Ron mentioned yesterday that Taylor was pretty responsive to the smells and taste stuff his PT and ST (speech therapist) put him through. It was cool to see, because even in this state, T is quite the character! For instance, when the ST held up these various vials of scents, he was pretty clear on what he liked, didn’t like, and when the jar smelled of onions, he actually opened his eyes a bit and looked around as if to say, “where’s the soup?”.. or, “is that a cheeseburger?” He has everybody laughing, like always.
He was NOT fond of the scent jar of cheap men’s cologne. It was like a bad Walgreen’s fragrance. I must say I saw that one coming. His facial expression was hilarious.
I was kinda sad this morning when I learned of his latest set of struggles, and the charge nurse approached me and reminded me that this will continue to be a roller coaster ride, and even so, he is WAY ahead of the game. The things the RT, ST, PT, OTs see in him leave them assured he is doing very well.
Moms and dads never want to see their children struggle or feel pain. But we have to remember in this, for every step back, in the long run, there are many steps forward.
It’s SO hard to remember sometimes. But it is true.
Please keep the messages coming…time is spent everyday reading through them. Poems are printed out and taped to the walls in his room along with photos, cards, etc.
Please remember to send photos – we will tape them up to start with, and then use them for recognition later.
So much love and big virtual hugs to all of you.
You are awesome.
God is awesome.
Taylor is healing…
