Monday, June 26, 2006

Latest from 7-9 am this morning:

Mike is responding well to the IV stress dose of Decadron.
They started it last evening and through the night and this morning he's talking again, can tell the nurses about Baxter and me and is responding quite well. Basically, he's back to where he was prior to the freaking taper starting last Thursday.

He got a CT scan last night and will get his MRI this morning.

For some reason, they listed Mike as NPO last night (no food or drink except with meds) - maybe because they thought he was too lethargic to swallow safely. But, that is a problem because when you're NPO, they automatically put you in the computer for IV fluids at like 80/hour or something. Nurse Seta (who was Mike's night nurse a lot when he was at JHN for 6 weeks in April and May) talked to me this morning and mentioned Mike was receiving IV fluids. I told her I was not comfortable with that. In the past, when Mike has received IV fluids and received his DDAVP to control his Diabetes Insipidus (the disease that makes him pee out all his fluids) then he retains too much water and drowns, dropping his sodium to the low 120s where Mike does not do well. I talked to Seta and N.P. Jaymie about getting Mike off of the IV fluids and just having him drink to thirst like he has been. For the past 2 weeks at Magee, this equation has been perfect, maintaining his sodium at around 135-140. Jaymie remembers this whole sodium saga and is going to work on getting him off of IV fluids.

I also chatted with Jaymie about how Mike is technically considered "continent" at Magee. No, he doesn't bring himself to the bathroom, but if he is brought to the bathroom every two hours, he does just fine. No accidents. At JHN they put a Texas catheter (the condom-like one) on him last night because he was peeing a lot with the IV fluids and wasn't awake enough to get up at all. Now that he seems to be responding to the Decadron, I told them it's my priority to get the catheter OFF of him and have the nurses and techs bring him to the restroom every 2 hours. We can't afford to backslide in this department if at all possible. And a huge thank you to Jalena for helping me stay strong on this point. She's been a great pep-talker for me on email.

A huge thank you to my neighbor Loren who dropped everything - including going to her daughter's friend's b-day party - to take care of Bax yesterday morning while I rushed to the hospital. A huge thank you also to Liz who came down for a visit with baby Noah (12 months) only to find herself taking care of Baxter and holding down the fort in the afternoon while Danna dealt with the drama at the hospital.


Jalena said...

IV stress doses, IV fluids, sodium levels,catheters, ERGHHHH!!!!!!!! And no need to have to go through any of it. Just keep him on 8 till the surgery!!!! Knuckleheads. WHEN will they learn? Hope all goes well today. I'll be checking in for an update. So glad you had friends handy. What would we do without those?

Dritsas said...

This Decadron situation is crazy. It's proven over and over again to be the source of decline for Mike. Why don't they see that?? Don't these people understand cuase and effect?

I can understand their concern about the eventual side effect, but as you say, the man has cysts in his head that need to be drained!!! That's a little more urgent, and he needs to be well for that.

Is there any way that you can demand they tell you when they are making decisions on changing his dosage?

You are such a great advocate Dana. Thank god Mike has you.

The Brain said...

I mentioned this whole stupid Decadron taper --> Mike doing shitty equation to Dr. Evans. He agreed that while there are serious side effects, right now for Mike this steroid is his life-blood. I'm not sure Dr. Andrews agrees, though. My understanding was that they weren't going to attempt the taper again until the 26th of June... instead they started it the 21st. I hate to be a needle in the ass, asking after every dose, "He got 8, right? Not 6?" But if that's what it takes....

On a more positive note, I dropped Bax at daycare at 10 am, came home and slept like a baby from 11 until 2 pm. Now with my new energy, I'm off to JHN to play advocate.


CSM said...

Stopped in super briefly to see Mike up on 6. He was sitting up-- had just eaten. Looked GREAT... REALLY! We chatted for a few minutes, he ate some choc cherries (seemed to like them alot) and asked for water-- and handled the cup/straw well... he mentioned that you hadn't been in yet (correct!) but didn't recall that they'd taken him for his MRI (bummer). He laughed when I told him about slurping spaghetti with Baxter-- and the spaghetti on the wall escapade. "That's my boy." He said. LOL. -CSM

Dritsas said...

Well, then, Andrew and Evans maybe need to be on the same page. I wonder: Has Andrews witnessed Mike's low Decadron episodes? My experience with (some) doctors is that sometimes they don't always fully grasp the reality of a situation until they see it for themselves. Maybe he hears you saying "decline" and thinks you're embellishing, because it doesn't match up with what should theoretically be happening.

OK, I'm being judemental, here, without all the facts. I'll stop now—sorry. I guess I'm just having flashbacks of when it took my family A MONTH to convince my grandmother's doctors that my she was having weird memory problems after a similar kind of brain surgery. They wouldn't believe it until they saw it for themselves, and she was the proverbial dancing frog from the old Warner Bros. cartoon.

Stay on them Dana. You know better than anyone about what's going on with Mike.