Our daughter Molly left protest-laden Madison, Wisconsin and headed to Chicago via bus and arrived around noon today. Steve's liver biopsy was scheduled for 2:30. Luckily his Mom and sister were visiting when Transport arrived at noon (don't ask, it happens) so they accompanied him to Interventional Radiology via the underground tunnel until Molly and I got to Northwestern.
The liver biopsy went without a hitch, about 10 minutes for the procedure. They gave him Versed as well as Fentanyl. No nausea. His south end is good. Only vomited once today, this morning. Starting IV nutrition tonight. Bumped his anti-nausea drug, Zofran, from 4mg/6 hrs. to 8mg/8 hrs. Increased his IV fluids. Goal is to stop both ends from exploding.
Today's funny comment: His IV stand is on wheels. So you take Waltzing Mathilda with you to the bathroom. If you are in a BIG hurry, you have to kick off the bed covers, and wheel the stand into the bathroom, drugged and possibly wobbly. The IV stand has electric pumps with battery back ups. You have to also unplug the IV stand, wasting precious moments. Steve figured out today that he has enough electrical cord to race to the john without unplugging, and that was a major win. Some days it's the little things like that that make a difference.
We are getting used to The Only Guy in sentences. His nurse said he is the first adult patient she has ever given Desferal (chelator) to in 17 years of nursing. He is The Only Guy she has had to check a ferritin level for. I asked, "so how do the other patients get rid of their extra iron? Put it in an envelope and mail it??" His labs were great:
WBC 8.6
Hemoglobin 9.7
Platelets 303
Ferritin has dropped to 3663 (Normal <400, he was as high as almost 9000)
Bilirubin is UP to 9.4 which isn't so wonderful
He is on a strong steroid, so that suppresses the immune system, his white cell count (WBC) was 10.3 a day earlier. He told me the Stem Cell Team, during rounds, is 90% sure his symptoms are truly GvHD and they are (and have been since a week ago Monday) treating him with steroids to combat the GvHD until the liver biopsy results confirm their suspicions. Taking him off Exjade, the first chelator, was the easiest thing to do first. He is back on the Tacrolimus and was resting very comfortably when Molly and I left at 6:30 tonight. He was very, very weak today but mentally sharp and positive about his health outlook, counting on a rally soon.
No talk of discharge or surgery. The team told him there is "no play book at this point," everyone is different and they will do their best to handle bumps in the road as they appear. They want him to feel better before heading to the OR.
That's it for today, thanks for the read.
I am "snarky" about GVHD and taking people off anti-rejection drugs. Hate GVHD worse than the devil himself or herself. Love you Sue, more than you will ever know. Love you and your daughters and your son, and love your husband. Can hardly imagine what all of you have gone through, only know that I wonder if I have the strength to go through it.
ReplyDeleteMaybe some people say "I understand" but I can not say that. I feel like what you have been through is more than we evolved to undertake. I think these processes are more than we evolved to undertake, and that they will cause cracks in our coping mechanisms. But I can only imagine.
You will get through this. I hope Steve gets through this. In my humble opinion I would not want him withdrawn from anti rejection Prograf any time soon, and I mean for a long time. Don't see the point and the risks are so great. OF COURSE I AM NOT THE DOCTOR. And I am not publishing any studies... I am a lowly health care person who only sees problems- why would I see the successes? Sending so many prayers, so many good thoughts, and despite being a former dog trainer and wanting a dog free environment for patient care, the animal looks like a healing force for the family...xxxxxxooooo
You are neither lowly nor anonymous ;-) Don't worry, you know I will ask a lot of questions and won't hesitate to get involved as his advocate.
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