((((((HUGS TO ALL))))))
Jon is a Man of Mystery.
He likes to keep us on our toes, guessing, wondering what surprise he will give us next.
Here's one of his mysteries~
Periodically, like today, Jon develops an elevated temperature. His normal temp is 97.6. He runs low, because of hypothyroid and anemia. Today, his temp gently rose to 100.3. Currently, his temp is 99.7. It fluctuates from hour to hour sometimes.
No Tylenol. I bathe him with tepid water (bed bath), which he emphatically does not appreciate, whenever his temp rises above 100. He is laying in his bed stark naked, which he also doesn't appreciate, and repeatedly tells me, "shirt," "blanket," to which I reply, "you have a temp," to which he responds, "NO!" Such fun. Good times.
Symptoms: None. Nada. Zip. Zed. Zilch.
He's peeing and pooping like a race horse. No trapped gas. No drooling. Nothing unique about his cough (it's chronic, of course, since he has a trache). No expressions of pain or discomfort. No open wounds. His toe is all healed, thanks to our fantastic new house call podiatrist, who will be here every 9 weeks to trim Jon's nails.
He's well hydrated and nourished.
His eyes are clear (usually bloodshot, when he's sick). He's quite verbal and articulate. He slept very well last night and for 9 hours, so he's rested.
His SATS are 95. His heart rate is in the 90's, because he has a fever. Started out in the low 80's this morning.
The weather here is mild in the 70's, windows open.
If today's fever follows the same pattern as the many similar fevers before it, by midnight, Jon's temp will be normal or close to it, and we'll be able to put a light hospital gown (which we call "shirt") on him with no sheet.
His nurses and docs are baffled, and we have no clue as to why Jon occasionally develops a fever.
Jim likes to say, "It's hot today." And I say, "It was hot yesterday, and his temp was normal. Anyway, he's in the house, and we've got the A/C on!"
Blaming it on the weather fails, when it occurs on a mild, pleasant, gorgeous day like today.
These are my shot in the dark guesses:
1. Hypothalamus, which controls body temperature. Michael also had unexplained fevers. Both Jon and Michael experienced Gelastic (laughing) seizures, which emanate from the hypothalamus.
2. Hormones. I'm just remembering hot flashes in my forties (and still today ), and Jon is in his forties, middle aged, entering a period of hormonal change. Man-o-puase. Plus he does have an enlarged prostate. And his thyroid could be fluctuating in its levels too.
3. Ruled Out: Bacterial infection in urine or lungs, because that would be continuous. Medications, same reason. Virus (as he has no symptoms).
Would anyone like to volunteer a guess as to the cause of Jon's sporadic, mysterious fevers?
If I could have an answer for just one thing that has happened with my boys, I would feel like I hold the knowledge of the Universe in my hands!
Why were my boys born with their condition? What caused it? Genetic? What gene?
We don't know.
Seizures ~ Why? Where? What happened?
We don't know.
Enlarged Prostate ~ Is that from being unprotected during thousands of x-rays? Is it from being catheterized too many times? Is it cancer?
We don't know.
Hypothyroid ~ Is that from seizure meds? Is it from being unprotected during x-rays?
We don't know.
I've lost track of the number of times I have heard someone say to me, "I've never seen anything like this in all of my years of doing (XYZ). You're the first one." That is not comforting. Nor informative.
I'd much rather hear, "Oh, yes. We've seen this many times before, and here's how we fix it."
Jon is watching "The Muppets Take Manhattan" this evening for the second time. We love the Muppets, having grown up (literally) with Sesame Street. And in many ways, they are us.
"It's not easy being green."
Love & Light,
Rose
Jon is a Man of Mystery.
He likes to keep us on our toes, guessing, wondering what surprise he will give us next.
Here's one of his mysteries~
Periodically, like today, Jon develops an elevated temperature. His normal temp is 97.6. He runs low, because of hypothyroid and anemia. Today, his temp gently rose to 100.3. Currently, his temp is 99.7. It fluctuates from hour to hour sometimes.
No Tylenol. I bathe him with tepid water (bed bath), which he emphatically does not appreciate, whenever his temp rises above 100. He is laying in his bed stark naked, which he also doesn't appreciate, and repeatedly tells me, "shirt," "blanket," to which I reply, "you have a temp," to which he responds, "NO!" Such fun. Good times.
Symptoms: None. Nada. Zip. Zed. Zilch.
He's peeing and pooping like a race horse. No trapped gas. No drooling. Nothing unique about his cough (it's chronic, of course, since he has a trache). No expressions of pain or discomfort. No open wounds. His toe is all healed, thanks to our fantastic new house call podiatrist, who will be here every 9 weeks to trim Jon's nails.
He's well hydrated and nourished.
His eyes are clear (usually bloodshot, when he's sick). He's quite verbal and articulate. He slept very well last night and for 9 hours, so he's rested.
His SATS are 95. His heart rate is in the 90's, because he has a fever. Started out in the low 80's this morning.
The weather here is mild in the 70's, windows open.
If today's fever follows the same pattern as the many similar fevers before it, by midnight, Jon's temp will be normal or close to it, and we'll be able to put a light hospital gown (which we call "shirt") on him with no sheet.
His nurses and docs are baffled, and we have no clue as to why Jon occasionally develops a fever.
Jim likes to say, "It's hot today." And I say, "It was hot yesterday, and his temp was normal. Anyway, he's in the house, and we've got the A/C on!"
Blaming it on the weather fails, when it occurs on a mild, pleasant, gorgeous day like today.
These are my shot in the dark guesses:
1. Hypothalamus, which controls body temperature. Michael also had unexplained fevers. Both Jon and Michael experienced Gelastic (laughing) seizures, which emanate from the hypothalamus.
2. Hormones. I'm just remembering hot flashes in my forties (and still today ), and Jon is in his forties, middle aged, entering a period of hormonal change. Man-o-puase. Plus he does have an enlarged prostate. And his thyroid could be fluctuating in its levels too.
3. Ruled Out: Bacterial infection in urine or lungs, because that would be continuous. Medications, same reason. Virus (as he has no symptoms).
Would anyone like to volunteer a guess as to the cause of Jon's sporadic, mysterious fevers?
If I could have an answer for just one thing that has happened with my boys, I would feel like I hold the knowledge of the Universe in my hands!
Why were my boys born with their condition? What caused it? Genetic? What gene?
We don't know.
Seizures ~ Why? Where? What happened?
We don't know.
Enlarged Prostate ~ Is that from being unprotected during thousands of x-rays? Is it from being catheterized too many times? Is it cancer?
We don't know.
Hypothyroid ~ Is that from seizure meds? Is it from being unprotected during x-rays?
We don't know.
I've lost track of the number of times I have heard someone say to me, "I've never seen anything like this in all of my years of doing (XYZ). You're the first one." That is not comforting. Nor informative.
I'd much rather hear, "Oh, yes. We've seen this many times before, and here's how we fix it."
Jon is watching "The Muppets Take Manhattan" this evening for the second time. We love the Muppets, having grown up (literally) with Sesame Street. And in many ways, they are us.
"It's not easy being green."
Love & Light,
Rose
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