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Our Rock Star has been doing everything he is supposed to
do. He has been walking, exercising, eating, but his new liver seems to be high
maintenance and is not happy. His liver
function labs have been declining and last night and this morning he took a
real hit. His belly is distended, his
energy and appetite are gone and he is back to the walker, he has had moments of delirium, his blood pressure was high yesterday, but today very low, and hemoglobin was
so low, he needed two units transfused yesterday.
His platelets are at 13 and they have him scheduled for 2 units of platelets immediately. The transplant team would like to do a biopsy but needs to re-check platelets after the transfusion. They also have 2 units of red blood cells and 4 units of plasma on hold (in case needed during biopsy?). There was an
order for NPO (no food/water) after midnight, but we don’t know why (precautionary?). While I was typing this, he had a seizure (or seizure-like) episode for about 30 seconds! Gave me a heart attack. In seconds I had a response and in minutes the room was FILLED with doctors and nurses. The new plan (after this episode) is to add some fluids to his orders and some albumin.
No pictures of him today as it isn’t pretty.
I can tell you that
Saturday he took a monster walk … all over the hospital … and wanted to go to
St. Luke’s Chapel here at the first floor.
He was feeling really good and very grateful. I leave you with this really good moment at St. Luke's and will update with "comments" under this blog post as the day goes on.
Extra praying today.
Fred had the biopsy this afternoon and remained stable during the procedure. (Yay!) He was evaluated by a neurologist who felt he did not have a seizure. Instead they believe it was due to low BP and low blood levels. (We can live with that.) Lastly, when the team just rounded they let us know newly transplanted patients get biopsy results back within 24 hrs so we should have a better idea what is going on tomorrow. If it is not rejection, they may have to seriously consider internal bleed post surgery that they can't see on the ultrasound. (Hang in there, Fred!)
ReplyDeleteOh my god! Karen, I am so sorry to hear this news. Hopefully just a scary setback that will regulate soon. Prayers back on tsunami level. I send love and support. Wish I was with you. XO
ReplyDeleteAHHHHHHHHHHHH! So not happy to hear about this setback, but i have faith that it's just kinks getting worked out while under expert supervision. You're both rock stars and handling each situation like the "BOSSES" that you are. Flooding you with prayers and love and healing bright light!
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ReplyDeleteP.S. love talking with you this past weekend. Miss you.
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ReplyDeleteHang in there. We are praying, rooting, and cheering for you.
ReplyDeleteThese uncertainties are bumps in the road, but hopefully, from here on out, the ride will become smooth.
You guys are both incredible and courageous. Keeping fighting!
Thanks for the encouragement everyone. We only have preliminary biopsy results. No rejection!!!! Next step is a CT to look at the hematoma on his new liver and to try and see what's going on. He had 2 transfusions Sunday, 2 yesterday, and hemoglobin went down again so he is on 2nd transfusion today. Unfortunately his kidneys are taking a hit and they do not want to do contrast on the CT so not sure if they will be able to see anything. I will continue to update as I know more. Thanks for the love!!!
ReplyDeleteHang in there, you sweet, amazing woman. Much love to Fred and hugs in abundance to you. XO
ReplyDeletePraying overtime for you both. You and Fred are strong and amazing. Hang in there and take time to breathe. Love you.
ReplyDeleteUpdated plan: ultrasound to look at blood flow and for hematoma. Echo of the heart to check that function asap. No food after midnight. Dependent on test results may need surgery tomorrow for a "clean out." We will know more by noon. Bless you all for your support. ♡♡♡♡
ReplyDeleteOk, we got the quadruple whammy of positive vibes, healing white light and there is a Reiki Master in Texas working on Fred as well. :) love you. You got this! Xoxo. Hugs!
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ReplyDelete"Clean out" sounds interesting. What a rocky ride for you two but the bull will stop bucking soon and you can rest easy. That's my prayer. Shades of my mom after a valve replacement surgery years ago...they had to go back in to "mop things up a bit" (their words) because something was leaking. Once that was repaired, she was off to the races. I'm praying for a similar outcome, sugar. Keep the faith! I don't know even one person as strong as you. Big kiss for Fred. Huge one for you. XO
ReplyDeleteYou both are always in my thoughts. Sending lots of love and prayers...xxoo❤️
ReplyDeleteI am praying for you guys and sending lots of love.
ReplyDeleteLast night Allie said, "Mom, it's 11:11. Make a wish" I made my wish and my prayer for you and Fred.
Hugs!
Saundra