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, the oncologist came in this morning to explain that Andy's lungs are showing traces of viral infection, Epstein-Barr.

The anti-fungal they had given him that did kidney damage was in fact needed to kill other things, but a piece they couldn't get was this.  So he is being treated for both fungal and viral infections, and they have to keep trying things to see what works because they can't get in there to take a biopsy.

It's just too much.  His EB level was elevated back in July, before his first chemo treatment was administered.  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.  The chemo drugs he was given also can reactivate it as it lay dormant in his system.  But still, it's just too much, my heart doesn't know how to handle it.

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.

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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. 

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. Mariano and Dr. Pearson, and many others.  I know everybody is doing as best they can, and we are just feeling very run down.

And then, again - like magic, as I'm walking around the parking garage having a panic attack, 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 also drove 14 hours 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 not feeling well, 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:

M & K, J & K, A & C,

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

Dr. McDermott, Sandy, Gloria,

All the wonderful Nurses & PCAs 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 top? 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