Day 4 At VA

I know what you mean, Marti! Having a free day is such a gift. Themister and I had one today, so we filled it in with flu and pneumonia vaccines. Done with that for the year.

Hope Mike continues the sobriety path and sails through his pre-transplant eval. Having a project, be it tires or oiling cabinets, can fill the time and keep your mind less worried. You have a good day and enjoy these small gifts :) Big Hugs

Sorry to hear of this sudden downturn. I'm not sure of what you mean by spots but I've had I still to this day have a problem with easily bruising. I can scratch a itch and easily make a blood blister of sorts. Appears to be little red dots to a full on welt depending how hard I scratch. Thin blood. I believe. As far as nausea and weakness it just goes along with the territory. Hows he eating? He's got to keep his nutrients up. Ensure or other dietary supplements will assist with that.

Cramping and weakness can be due to the diuretics. He needs to get to the hospital have them look him over and readjust his diuretics. Remember it's touch and go for each individual and liver disease, One size doesn't fit all so what may work for some want work for others. I'm sorry for you both but your certainly not alone. It's a painful process. Each time I respond to these post brings back a different memory of those really bad days. The good thing about those bad days is, Well....... they are memories now. He has to fight like hell but it very well can be worth it. Take it from a survivor.

Ziff

Be thankful the PICC is in. My wife did not have that option so had an emergency one placed. in the femoral. When they went to take it out? Paperwork got mixed, I was at work, I can't do everything. They pulled it while she was covered in Heparin. 6 hrs of pressure (there was a lot of switching off) and a couple ceiling tiles needing to be replaced...yeah.

Great aptitude Marti. You are quickly adapting to this and that's a great sign. I admire your strength, Reminds me of my wife. You got alot on your shoulders but remember you have to take care of you. Rest and try not to worry, lean on your faith. Tomorrow is a new day.

Ziff

I'm out of town but reading on my phone. Sounds like you are both doing what needs to be done. Thoughts and prayers heading your way.

Hugs,

ML

Great news Marti. It's not uncommon to my knowledge to see a little pinkish color in the ascites. It shouldn't be the norm by any means but it does happen. I've had that experience myself on a few occasions. Are they or have they been administering albumin after the paracentesis (tap). If not, insure that they do. Putting proteins back into his body is very important. Sadly most hospitals overlook this. Albumin has a relatively short shelf life and is therefore expensive to keep on hand. It will help nourish his body and assist in the healing process.


Ziff

Sounds like they are on the ball. Seems like a good team you got. I'd make sure they know it and don't forget to say thank you to them. Can't stress enough about building a friendship with staff. Particularly with nurses, get to know them all on a personal level. I no longer need to see my nurses from the onset of my journey with ESLD but still check in and bring the nursing station flowers when I'm in the area. A few became like family and my radiologist and I see each other at the strips (Drag Racing). He and his son own a car that's pretty fast. I'll keep checkin in on you guys and rest assured I'm thinking of you all.


Ziff

Creatinine back to 4.9 today, but still good output. Worried about an abdominal bleed. They won't do a parencentisis due to bleed risk. CT 2 hours ago with no results yet. Platelets and hemoglobin are still way to low. Possible blood and plasma transfusion tomorrow (pending morning bloodwork). Was switched from Oxy to Dilaudid.

Platelets llast night. Not responding to current antibiotics so they're switching today. Bleed is likely lower GI. They are going to test abdominal fluid, but are worried to do it. I had a sense that today was going to be a rough one...More like a sense of dread leaving the hospital...I learned many, many years ago to follow your gut feeling...

Update...We're now on Lactulose enemas. We're waiting to see if it helps the HE at all. Same infection which is not responding, so switching antibiotics. He told his mom he feels like he's dying and refused pain meds until this evening (when he found out he was getting an enema). Doc said tonight is not the night...Bleed risk is still the biggest concern...

Post Edited (Martijean1) : 10/10/2015 7:05:54 PM (GMT-6)

MJ, Your journey is bringing me back to some dark days. I came on this site so many times with the raw pain I see in your hubby's tale....like walking the halls of those hospitals, worrying every second, seeing your loved one in so much pain. We planned for the worst, but prayed for the best. Our journey should give you hope as 5 years later he has his new liver and is feeling like a normal person again. And our life goes on...

Hoping for the best for you too.


Hugs,

Mama Lama

Mike now has comfort care. We are not "officially" hospice. We got a lucid moment today after letting pain meds wear off. He wants to live. Antibiotics are being continued, but monitors are off. Fluid intake is literally "weeping" from his veins into other organs with no way to stop it. He will not survive any heroic measures (without a machine) if anything happens...We are heartbroken in MN tonight. He IS able to suck through a straw (mind/body connection is gone for "real" food). There is a DNR in place. He has stated to numerous people over the years that he would not want to live on a machine.

Hugs and prayers to you and your family....for either a peaceful painfree passing of your dear hubby....or a miracle. I agree with the comfort care approach. Hugs, Mama Lama

Mike waited until it was just us, his mom, sister and the Chaplin. He was still in the room after prayer when Mike took his last breath. I think he waited for the Chaplin...