Where we are now

 

We had a very tough night.  Once again Andy was dealt a round of Lasix (which I know they have to do this because of the fluid around his lungs and in legs) but we looked at each other with exhausted glances.  Sure enough, we were up every 40 minutes from 10pm to 5am.  It hits him faster than he can hit the nurse call button.  He is also on Oxycodone and Atavan for his stomach and biopsy site pain, so he is very unsteady in the night.  Finally, at 5:30am, a solution was found and Andy and I were able to sleep from about 6 until 8am.

Then, Dr. Cerny came in this morning to explain that Andy's lungs are showing traces of viral infection, including possibly Epstein-Barr.

The anti-fungal they had given him that did kidney damage was in fact needed to kill other things, but the last piece they couldn't get was this.

My mind goes wild with guilt.  Did I do this?  His EB level was elevated back in July, I know this from looking at his chart but some where back in my mind I remember someone saying it was nothing to worry about... I just can't remember, so much changes so quickly.  However, even though Andy never had mono growing up, Epstein Barr is one of the most common viruses on the planet, and he could've gotten it anywhere at anytime.

Andy as always is so good, so on it.  Even exhausted, sore, hooked up to 4 machines, he knows and understands all the medical talk thrown at him, better than me.  He, as always, never ever gives up.

. . . . . . . . . . . . . . . . . . . . . . . . .

Wonderful RN Pam who has been excellent in every way.

As has RN Kelly and Catherine and Taylor ... love all of them so so much.

So many incredible nurses are there for us in the clutch.  I also love being able to say hellos to

Many thanks to the people who reached out with their own stories and care-giving journeys.  I don't blame the doctors, many of them are in fact excellent and compassionate people who we enjoy working with very much, such as the brilliant Dr. Melissa Mariano and Dr. Laurie Pearson, and many others.  I know everybody is doing as best they can, and we are just feeling very run down.

 

So run down in fact I continue making stupid errors. 

I came home to do laundry, get mail and write an update, and realized I didn't properly package a silk screen poster that went out to a client, so I had to resend one and now the post office charges a stupid $21 fee to send it in an "unusual shape container" so I was out $200 (my own fault) and then I had absolutely no idea where I parked, which if I had followed Andy's advice and parked in the same area all the time it would've been easier...

And then, again - like magic, as I'm walking around the parking garage crying and desperately trying to ping my car alarm, friends from church ask if I need a ride, rescue me and get me through it.

My lovely sister Audra also drove up 14 hours from North Carolina to see if we needed anything, and brought me medicine.  I was in the elevators entering into a panic attack, when she texted me:

 "I'm here, sorry for being unannounced."  :) 

I am devastated to find out I am running a temp of 100.3 which means I can not go back to the hospital for the time being.  But luckily Audra is here to take care of me.

I am praying every night he will be ok and in less pain, and that I can see him again soon.

Many thanks to:

Matt and Krystine, Joe and Kate, Adam and Caitlyn,

RN Pam, RN Taylor, RN Kelly, PCA Lorena,

Dr. McDermott, Sandy, Gloria,

All the wonderful Nurses & PCAs on the 8th floor who do so much for us 24 hours a day,

David and Kathleen, Audra, and the nice gentleman in the elevator - Bruce,

(who called me m'am and said he'd pray for Andy in this exchange:)

"Oh you're going to 8? What's up there?"

"My husband."

 "Ohh... I'm so sorry. What's his name?  I'll say a prayer for him."

 

THANK YOU  THANK YOU  THANK YOU