WARNING:  Today's post is full of medical terminology and acronyms.  I haven't translated most of them, because that's just beyond the brain power right now. 

But the long and short of it is, heart rate is still quite high.  Cardiology is not concerned and they explained why and I'm comfortable with the explanations. We're re-exploring the possibility that it's pain/discomfort related even though he doesn't act like it.

Sleeping exactly sideways
in his bed.  He kept wiggling
and moving until he managed
to get in this position.
Then he was comfortable...

Also, this evening, I had a wonderful phone call from Caleb's mom, Jeannette.   She’s concerned about Aaron and wanted to see if she had some ideas that would help. I am so grateful that she was willing to take the time to do this. It’s because of Caleb that we’re still here. I was so uncomfortable going home, largely because of him, that I asked to stay and I’m glad I did. She is such a marvelous woman and I am so blessed to call her my friend and sister.

So, with the above warning in mind, here's all the nitty-gritty details of the past 24 hours or so.

Saturday evening,

7:00 p.m.  Okay, two big dirty diapers and one small one.  No change in the heart rate.  He’s really got us stumped.  See, this is the crazy part. His other vitals are all GOOD. BP, respirations, fluid output, etc. He is on a little more O2 than usual. He's been on about 1-1.5 lit at home for the past few weeks and we're sitting at 3 liters. He doesn't act like he hurts at all, and when we added Lortab to the Motrin today it didn't touch his heart rate, so I don't think it's pain. He hasn't had any morphine or anything besides regular Motrin since yesterday afternoon, except the one dose of Lortab this morning.

So we're not going home tonight. His doc felt he was lower on his HR, but he was also sound asleep and way above baseline there. So we're waiting for him to wake up and be playful. If he's above about 140, they'll look at lasix and maybe a blood gas and some other labs, even though it doesn't look like there's extra fluid. And if that doesn't work, they'll get in touch w/ cardiology. But honestly, every time they contact cardio about something new, we do another echo & EKG & they look better than the previous ones. I just don't know what's going on. But I know I don't want to go home and come right back again.

9:00 p.m.  We’ve done a chest x-ray, even though there are no clinical signs indicating a need for it because we’ve almost run out of things to try.  He’s in the high 120’s right now, but sleeping.  He was mid 150’s when awake.  In the past, his high heart rate alarm has always been set at 160 (kind of a random number, just meant to make someone notice, not necessarily dangerous)  and it NEVER went off.  Sometime in the 24+ hours we’ve been here, can’t remember when, it was adjusted to 170 because it was going off so often. (For reference, his heart alarm is set at 220 at home, but if it ever hit that, we’d be calling for help.)

One T18 mom suggested we look at a possible UTI because sometimes her daughter’s manifests that way.  So if the x-ray doesn’t show anything, we may look that route.  It’s just so strange that nothing else seems to be involved here.  And he seems to be quite a bit more tired, but that may just be me looking for something.

Sunday morning 9:00 a.m. – We’re stumped.  Urinalysis came back negative.  Chest x-ray looks as good as it ever has.  We can’t get a good weight on him because of his casts, so it’s hard to tell if he’s retaining or not, but he doesn’t look puffy.  They’ve pulled a CBC and those numbers look pretty good.  In fact, his hematocrit (would measure for anemia) is within normal for the first time in ages, if ever.  His blood gas suggests that his kidneys are holding onto bicarbs which is increasing his CO2 levels a little.  That’s the opposite of what he used to do where his CO2’s would be high and cause his bicarbs to increase.  It’s really early to see signs of infection, but we’re watching and there are none.  There was almost no bleeding at all in the OR, but again, if he was bleeding, it should show something on his CBC.  He is more tired.  He slept almost all afternoon, and then again really well last night.  He never woke up for his late evening playtime.  And after sleeping like that, he should have been awake and active, but he slept all night except for a brief period right around 2 a.m. 

Long and short is, we really need to figure this out, or at least have it resolve.  It’s hard on a heart to be beating too fast for so long.  This is not what he needs.  And who knows when we’ll be going home…

Noon:  Cardiology just stopped by.  They feel that from a cardiac standpoint he’s doing well.  They’re not worried about heart failure because he’s had a normal rhythm the whole time and he trends up when active and down when asleep.  So it’s normal trends, just higher than normal.  They recognize that he’s tachycardic, but feel it’s due more to a response in the body than the heart.  Or, in other words, the body is telling the heart it needs to go faster for some reason.  Last night they gave him his previous lasix dose, but it was really tiny.  He had essentially outgrown it before we stopped it.  So they’re recommending that he receive a dose that is based on his weight and see what happens.  Right now, he’s happy and alert and playing with his toys. 

7:00 p.m. – So we’re looking at pain/discomfort management again.  The doctor has scheduled Lortab every 6 hours through the night.  Unfortunately, he doesn’t much like Lortab.  Right now he is beyond exhausted, but just cannot fall asleep.  I think when he does, he’ll be out for a long time. 

7:20 – Finally out.  Hoping he stays that way.  His night nurse has been alerted to his trouble relaxing and if it happens again after his 8 o’clock dose, then we’ll contact the doctor and try to come up with something else we can do for him, maybe piggyback Tylenol & Motrin??

8:00 -- I may have spoke too soon.  Lortab was 20 minutes ago and he's restless.  It could be a very long six hours if it's caused by the Lortab....