Daily Archives: January 13, 2011

And so it goes

We had a good, nay, a GREAT day, yesterday.

Today, not so much.

But that’s the roller coaster of this mess. Up and down, down and up. It’s difficult to access how each day affects his overall prognosis. Especially when you have a day that seems to set you back 2.

At 4am his hemoglobin, platelets, and blood pressure were stable. At 10am, they weren’t. In the short period of 6 hours, the world turned upside down. He needs blood, he needs platelets. After several interventions (i.e. albumin boluses) his blood pressures are still low. Initially they thought his blood pressure was low because they pushed too much trying to get his kidney’s to flush out all the excess fluid. Maybe now he is too ‘dry’.

Or not.

Maybe he’s just getting sicker.

Maybe today is the day he tips over the edge of the black hole and can’t be brought back, maybe in those 6 hours the universe shifts.

*sigh*

It’s the emotional roller coaster that take’s it toll. Well-meaning folks ask how I’m doing. They express disbelief at my mental fortitude. They offer up suggestions, that well, I’m uncertain about. Sedatives? Anti-depressants? Sleeping-pills? *gasp* A therapist? Alright, alright, settle down – I am not opposed to any of these things. But right now, in this moment, I don’t want drugs – I don’t want to not feel what’s going on here. Someday, the time will come when I won’t want to feel anything.

I’m pretty sure at that point, a good bottle of wine will do the trick.

As for the therapist, I was not really given the option to say no to that one.  She appeared at my door a few weeks ago, sent from the team as a resource and a way, I’m sure, to confirm that I wasn’t headed to the padded room reserved for 1. We talked. She asked questions, I answered truthfully. She acknowledged that I didn’t need her. I was coping well with it all, the highs, the lows, the very lows. It is my strength, she says. The ability to be focused and in the moment and not fall to pieces. Yippy Skippy. Maybe if I didn’t have to use the skill so damn much – I wouldn’t be so damn good at it.

So here I sit, the air knocked out of me, watching David sleep. Every now and then we rouses and opens his eyes. Today more than any other in recent memory, he has spent a great deal of time with his eyes open. But his eyes are unfocused. They no longer move together as eyes should. Nor, do they track, either to my voice or to an object in front of him. In fact, the doctor stood and flicked her fingers directly at him, almost touching his eyes.

He. Never. Once. Blinked.

Now comes the realization that he may not be able to see. It may be swelling, it may be weakness, it may be permanent.

Life and death, darkness and light.

*sigh*

As of right now, his blood-work is stable. He appears to be comfortable. I’ll know what tomorrow brings when it comes. As for now, I’ll recite my mantra:

Every. Damn. Day. Just. Do. IT.

Categories: Life | Tags: , , , , , , , | 14 Comments

Today is a GREAT Day!

The Attending said so. And who am I to argue?

Today is a GREAT day.

It has a nice ring to it, doesn’t it? Today is a great day. I can’t say it enough – it’s quite the weight off your shoulders to have the Attending come and sit with you, ask you how you think the day is going and in response, say “TODAY IS A GREAT DAY!”

David has a very long list of things that are wrong with him. That hasn’t changed. I am by no means saying he’s out of the woods, by no means, whatsoever. I think what has shifted from these awful past few days, is his potential to survive. In spite of everything that was looking so grim, he has turned around and taken a David-sized step in the right direction.

His bleeding has slowed tremendously. Yes, it’s still there, but he’s actually gone more than 12 hours without a drop in his hemoglobin or platelets. His fibrinogen is still low, so he received the cryo again this morning. His kidney function has improved somewhat, which tells the doctors that the damage he’s sustained is potentially reversible. They’ve actually stopped the bumex drip and given him a fluid bolus because his blood pressures were low, indicating his kidney’s have worked hard to flush away what his body didn’t need.

His chest x-ray looks about the same, but according to the ventilator readings, they were able to wean his settings down a bit. He was only 3 points away from needing the life-support ventilator, now he’s 7 points away. GO Captain!

And are you ready for this? This is really what tipped the scales from “good day” to “GREAT DAY”….. Drum-roll, please……His adeno count is down to 500,000!  I cried when I saw that number. It’s still high, but compared to the 1.7 million yesterday, it’s just the miracle he needed.

Which, of course, steers my discussion to last night’s prayer vigil/ prayer chain.  You guys are Amazing. I continue to be awe of the hundreds, potentially thousands (the lurkers, remember?)  of people that have prayed and sent their love and kept us in their thoughts. Everyone and I mean, everyone that walks into our room, comments on the peaceful, calm nature of it. Is that all the love and positive energy you guys keep sending our way? I’d like to think so.

I am truly blown away at the impact Capt Snuggles has had on so many people. What started out as a way for me to chronicle our time here, has turned into something more. It’s turned into a refuge, a place I can pour my soul out and receive love and support back ten-fold. I thank each and every one of you- your comments keep me going and your energy keeps the Captain strong.

Many of you have expressed the desire to help. My dear friend Kirsten, up in Toronto and my new friends, Tami and Dave have come up with a brilliant way to help – Donate Blood. With all of the blood transfusions, plasma, platelets and other blood products that David has received over the past 5 months – he’s really put a dent in the supply! In the past week alone, David has received approx 6 full units of blood. That means 6 different people had to donate blood this week JUST FOR DAVID.

Imagine the thousands upon thousands of people that will need blood products in the upcoming weeks, months, years. Imagine all the babes like David that would be lost without these blood donations. There’s always a need for blood.

Okay, I’ll get off my soap box now.

Tomorrow is a high fluid volume day for David. He’ll get cidofovir, IVIG and quite possibly more blood products. 

*sigh*

Tomorrow is another day.

Categories: Life | Tags: , , , , , | 26 Comments

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