12/29 - On the 5th day of Christmas my true love gave to me...

Well, actually, he re-gifted me a continuous (CVVH) dialysis machine. 
While that is a little disheartening, and I might have looked like this ----------> 
for a bit after hearing that, there is some good news with this turn of events. When they took Sam off last night, they were trying to see if his kidneys could pull off the remaining fluid he has retained on their own. While they were unable to do that, they are functioning much better.  There's just still too much fluid in there for them to handle on their own.  We really don't want to overwork them because of the damage they've already sustained, and after getting over the initial disappointment of seeing its return, we thought it was the best thing for him. 

And then, after several hours with CVVH...the machine started getting blocked with clots again.  (Please refer to above face.) They have tried every intervention to prevent that from happening that won't exacerbate the brain injury. So, it looks like we're going to stop the CVVH and try the Lasix intervention they tried last night.  His kidneys are improved over last night's function, so we're hopeful that this time it works better.  It looks like he has about 8 liters more of fluid to pull off.

This morning, Sam also got a new trach. I tend to leave the room when they do invasive things. They were done when I got back, and things were pretty calm for awhile.  A few hours later, respiratory returned to replace that trach with a larger one.  There has been a lot of discussion about the type of cannula in the trach, and so once again, I left the room.  When I returned, the nurse said everything went smoothly, so that much is good.  This new trach only needs to be changed once a month as opposed to once a week, so in the long run, this will be better.  

As for other things going on, not much is happening that is new.  They're still keeping an eye on the fever, and he's on antibiotics to control any infection he has.  The lung X-ray is looking clearer today, so that's good news.  His blood pressure seems to be holding as well, and I really don't have much to add about the liver since last night.

This has been a little bit of a rough day for me to watch all of these interventions, and to see something else not work the way they were hoping. I am looking forward to a time when all of his systems can be stabilized so that we can see what's going on with neuro.  Until then, I keep working on what in our house we affectionately call the "patience muscle." 

Prayer requests for the day are:

• that we can find a treatment for his kidneys and for fluid removal that work for the duration of this condition
• that any infection he may have is under control, and that his fever can also be controlled.  
• for all of his caregivers.  They are doing an incredible job, and Sam's really making them work extra hard on everything he's got going on.

Thank you.

I know he's been "asleep" for about 17 days now.  However, every time he seems to be able rest, someone new comes in and moves him around. The picture of the day is of Sam a long time ago when he actually was able to just fall asleep without even trying. Love you guys!