Thursday, December 25, 2008

From Mike: Christmas Day

Merry Christmas!

Today is her 1 month post transplant mark. She didn't sleep much last night again. She's still very nauseous. Her counts are looking better today. Her WBC is 5.620 (normal 4.8-10.8), neutrophils 3.85 (normal 2.2-7.6). Her platelets remained stable today at 33. Most importantly, her bilirubin is down again today. It was up to 21 a few days ago, it's now at 17.3 which is slightly lower than yesterday. Hopefully this trend continues. Her lungs seem to be slowly improving, they're gradually lowering the ventilator settings and trying different modes that allow her to do some of the work but with the nausea it's been difficult. They think the nausea is from an ileus which means her intestines aren't moving things through. The good news is that it appears on the x-ray to be just air. She's full of air and it's having a hard time moving through. That backup and pressure is causing the nausea. You'll notice in the pictures a tube going up her nose. That's a nasogastric (NG) tube. They use that to give her nutrition but it also has a vent that allows air to escape back up, like you do when you burp. They can also put suction on the end of the vent and help pull air out. They've moved the nutrition to IV because of the nausea and ileus but they're still using the NG tube to help the air escape. Later today we're going to try getting her in a chair again. Moving around will help move things along in the intestines.

They're going to do a liver biopsy, hopefully tomorrow, that should show if there's any VOD or any other disease that could be affecting the liver. If it shows no VOD, she could come off the defibrotide which would be another drug that could be causing her some problems. It could also be the only thing helping the liver so they want to do the biopsy to confirm. The biopsy isn't as bad as it sounds, they actually go in through a blood vessel from the shoulder area and travel down the vessel with a wire until they reach the liver. Then they take a sample from the inside. This minimizes risk of infection and bleeding.

Update: 3pm
Her nausea has gone down a lot today. She hasn't thrown up since this morning. It's uncomfortable when they move and suction her so sometimes she has a gag reflex. She did sit up a little today which should help her digestive system. We haven't made it to the chair or bed side yet, maybe later. Overall she's having a relatively pretty good day.

Update: 9:30pm
Dawn has been having a hard time breathing. Her respiratory rate has been up in the 60's for the last 4-5 hours which isn't fun. It appears the NG tube came up slightly so it wasn't venting properly and her stomach became very large, pushing up against her lungs. She also didn't get dialysis today so it appears the fluid around the lungs are affecting her too. There was a brief scare because this came about suddenly and her belly became distended. Her platelets were also low today so there was some concern that something was leaking somewhere. They did a chest x-ray and an x-ray of her abdomen. Everything looked ok except for the placement of the NG tube. They tried a few things on the ventilator to try and get her rate down but nothing worked. They also tried a saline flush of her lungs to clear up any blockage. So far nothing has worked but they're giving her a bunch of medicine to try and get her to sleep. She's been mostly awake for the last three days and two nights. While she's sleeping they're going to change the vent settings to try and get her lungs to expand. Hopefully when she wakes up she'll feel better and they can do dialysis early in the morning. She had a pretty good day until about 6pm.


Anonymous said...

Merry Christmas to you all there, been waiting for your post this morning hoping that the Christmas miracle did happen. Most of your report sounds good, the bilirubin is the only one that I hoped would be lower. Still wonderful to see Dawn with the smile on her face. We'll be waiting to see what the liver biopsy shows, good news we hope. Dawn, may God always be at your side to help you through the difficult times. Wishing you a safe, healthy, and Happy New Year.
Grandpa Tony & Nancy

Maria G @ Sea said...

Merry Christmas to all you guys! Sounds like mostly good news! hope the nausea goes away & the liver continues to improve. You are all in my thoughts, hope you have a great holiday! Mele Kalikimaka from Hawaii!!
lots of love,

Anonymous said...

Merry Christmas Mike & Dawn!!

She looks so much better today. It is nice to see her eyes open and a little smile. This is the start of good things to come, I just feel it. God is answering prayers. It's good to hear her counts are so good for the WBC, neutrophils and platletts. Keep fighting Dawn. It gives all of us hope if our meds stop working.
Mike & Dawn your blog is superior. The details of every test and results is wonderful. Thank you.

Anonymous said...

Hi Dawn, merry Christmas. We are so thankful that you are better and counts are good. Now if the liver problem gets better then we all will feel better.I thank GOD THAT PRAYERS HAVE BEEN ANSWERED and will continue. I am sure that Steve beeing there will help and your dad and Will stopped by for couple of hours on his way down there. May God hold you in his hands... Grandma Green

kris gruca said...

Merry Christmas Dawn, Mike and Family!!!


Toni Baker said...

Merry Christmas Dear Ones,
Every day brings progress and we are so happy for you. Keep getting stronger adn you will soon be home.Then you can meet your nephew Brady.

We love you!
Mike's Mom, Gina, Ashley, Tommy and Baby Brady

Anonymous said...

This is awesome news! You're looking great Dawn! Merry Christmas you guys!

Tara said...

Merry Christmas you guys! So glad to see your liver counts are doing better. Hopefully this biopsy will show your liver is ok, matbe just a little pissed about all the meds your on. I hope they can take you off the liver med and you get better quicker. your doing a great job Dawn (and you too mike). Merry Christmas you guys and may the new you only bring you more happiness.


Anonymous said...

hey! be strong! i am also a Leukemia patient(AML) and have BMT for seven ears.
at first,i was searching Gleevec by Google and i see your are very strong Dawn,be sure you will make it.i remember in 2001 when i was diagnosed AML, my doctor said its hard to reat. because my type M6 in AML is very rare and highly fail rate. but i always hold the faith that i can conquer the disease. 2001's christmas i was given my brother's Peripheral Blood Stem Cell. 2004 doctor said that my disease almost cure, no bad cells found in my blood and bone marrow.they are very surprise, because the patient in AM6L is rare to survive.however i succeed. so as i can counqer the disease for seven years, i am sure that you can do it,too. be have faith,never give up.
by the way, now i was working in a social welfare organization for BMT patient. i serve as the editor by writing some medical essay about leukemia and HSCT for Leukemia patient. below is my organization, and here is my essays Sorry that the words is in traditional Chinese. OH! this is my blog, its my photos recently hope i can see you playing on the beach soon.

Anonymous said...

Great to see Dawn with a smile - Tif we miss you and wanted to wish you Happy Holidays.

JD & the CFB team

Gale said...

My daughter was one of the doctors assigned to Dawn on the day that she died. She sent me the blog and I feel compelled to write and let you know how sad I am to hear of Dawn's death; but also how blessed I feel to be able to know her struggle and the struggles of those who loved her. I wish I could have known her for she sounds like a magnificent soul. May God watch over all of you as you mourn her loss.