Sep 2, 2011

Mystery to Solve

As you know, Manny was sick with respiratory stuff last week. By last Saturday, it was completely cleared and not even a cough.

Sunday and Monday were normal.

Tuesday he woke up with 103.2 fever and no other symptoms. (Nothing). That resolved by midday.

Wednesday same 103.1 fever, only symptom was some dried blood around g tube site (more than usual but not significant). Fever was gone by 10 am.

Thursday fine … no fever. Only had a strange bowel movement (more loose than normal).

Thursday night … went to be very grumpy. Did a pulse ox and it was great. 96 or so and a 95 heart rate! Turned it off. Woke up a lot to be repositioned (more than normal and saying owie). 2:30 woke up SCREAMING and would not be consoled. Finally fell asleep around 3pm. (Not his normal.) 4:20 woke up screaming again and this time had 104.4 fever. Gave him Tylenol. (He has no covers, sleeps in light clothing, not a hot room, etc.) Turned the pulse ox on as I could tell his heart rate was sky high. 250’s. Even when he was laying still and quiet and fever was coming down, his heart rate was in the 230’s. He was pointing to mid area (heart? Stomach?) and saying “Owie right there”. Then he started retching so I drained his gtube and out came 80-100 ccs of fluids. (Usually there is nothing … if there’s anything it will be stomach acids or saliva. This was not those and was not milk. Have no clue what it was.) He finally was able to settle down about 7:30am (after 3 hours of dealing with him and trying to make him comfortable). But now, while completely asleep his heart rate was still in the 190’s. (No fever, my guess is pain.)

I decided I’d call his doctor when he woke up for an appointment … BUT … When he woke up at 9am, he was fine. Acting totally normal. Symptoms all gone. So instead I sent her a fax including all the details on here.  She agreed with me, this is strange with no clear cut answer/solution. 

I am telling you all this for a few reasons. I want to keep you informed. And also to let you know that if he does that again tonight, we will take him to St. Joe’s.

Such a strange mystery.  Anyone know why he'd have troubles at night but not the day?  The only things I can think of that's different. 1) The room he's in at night is a different room we're in during the day.  Perhaps an allergy in there?  2) He is at a different angle.  During the day we keep him completely upright (like in a wheelchair, high chair, etc). But at night, he can't sleep at that angle so he's at more like 45 degrees (the doc recommends 30 minimum).  And do you guys think it's heart related or stomach?  Do you have any clues about what's going on?  We're all ears.  You can respond on here, on facebook, or privately (  Thanks

Happy labor day weekend!

Beth and Manny

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