Sunday, December 21, 2008

From Mike: Day +26 (Day 20 in ICU)

Update: 945am
She had a pretty restful evening. When she's awake she's very irritated, constantly trying to pull on tubes, wires. She seems very confused. There's a condition known as ICU Psychosis when a patient in a confined area experiences anxiety, confusion, disorientation. There are many causes of ICU Psychosis including a combination of surroundings, lack of stimulation, confusion of day and night, drugs, high liver enzymes, and fever. Dawn has all been experiencing all of these. They're going to try some other anxiety drugs. It's hard to find the right combinations of drugs to keep her comfortable and anxiety down. Also some of the drugs are hard on the liver so they can't use some of the drugs they might normally use. When you finally find the right mix of drugs, her tolerance can change and a combination that worked before, no longer works and you have to try something new. One thing that may help is a tracheostomy. Instead of having the breathing tube down her throat, it will go into her neck straight into her trachea. This sounds worse, but it's more comfortable because you can close your mouth and even talk. She might need less sedation which could help in a lot of areas.

The two big concerns are still the lungs and liver. The broncoscopy they did yesterday was clean, showing no signs of infection or hemmoraging. They think it could be caused by a condition known as engraftment syndrome. The treatment for that is steroids. They think her liver issue is from cholestasis, which is a result of all the drugs she's been taking. Her bilirubin has been rising the last few days and it was up to 11 yesterday. Today it's 10.7 so hopefully it's stopped getting worse. It could also be acute graft vs host disease (GVHD) but usually the first area to see GVHD is the skin and she shows no sign of having any skin problems. The liver is rarely affected by GVHD and her alkaline phosphatase level has been stable which is usually another indication of GVHD of the liver. The treatment for GVHD of the liver is steroids, which she's already getting for the engraftment syndrome. The VOD is still a concern but her blood flow in the liver seems to be normal and the liver isn't huge. Her blood counts are still doing good. WBC is 4.960 and neutrophils are 4.216.

Update: 3pm
She finished dialysis today and in three hours they took off 6 liters of fluid! That's 13.2 lbs of fluid. Initially they were going to only try for 2 hours and 3 liters. When the dialysis nurse came she noticed that Dawn's vitals and swelling looked like they could do better than 3 liters. She called the Renal Doctors and they came back and agreed. Her swelling looks a lot better today. Her stomach is still distended but her arms, legs and face look much better. I imagine they'll be less aggressive tomorrow but she still gets a lot of fluid each day so in order to actually reduce the swelling they have to take out what she gets in, plus some. I believe tomorrow she's going to get the trach so she'll probably get platelets tonight in anticipation of the procedure. Her platelets are constantly falling so she gets them frequently. They generally like to have her platelet count over 50 before doing any procedure that could involve bleeding.


Ingrid Serra said...

Hey guys! I'm cheering you on. I know you can beat this. I'll be giving blood and registering for bone marrow donation straight away! I'll do anything to help no matter how small.

Tara said...

hope all goes well with dawn's procedure tomorrow. maybe getting those tubes out of her mouth will help with some of the agitation. still praying for Dawn here in chilly philadelphia.


Matt said...

Hi Dawn and Mike,

Wendy and I think about you guys everyday. We're pulling for you as so many others around the country are.

Mike, thank you so much for keeping this journal up to date. It's not easy going through what you guys are. This journal helps us all be right there with you in spirit. We read every day and hang on your every word.

Take care,

Matt & Wendy

Anonymous said...

Mike, Dawn, and Mom Nelson,
It was good to see you all yesterday and I am glad I got a chance to catch you before you left Mike.

I hope that you have a safe trip and that Dawn continues to improve.

I'll see you all next sunday and I'll try to get Dawn a tag and some other toys for stimulation.

Love you guys and I'm praying for you to keep the strenght up.

Lauren Gunn

Anonymous said...

Terry O;
Dawn & Mike, I am a friend of Dawn's mother; Christy and I just heard. We will put her on church email prayer list and will be believing in miracles for all. God can work miracles; all we have to do is BELIEVE.
Colorado Springs is praying.