B Positive - Day +9 and +10

It is Julia again.  I'll get into John's status in a moment but I wanted to share something that is important to John and me. I called this post B Positive after a nurse a few weeks ago entered John's hospital room on a less that good day, looked at the units of blood she was about to hang for him and she said, "You're B Positive. Thanks to you, that is going to be my motto for today." Today I need this reminder as John continues to receive the gift of life.

Today's PSA

I have had so many people reach out during these tough weeks and ask "What can I do for you? Drop off a meal? Help pack (we are moving in about 2 weeks)? Help with repairs at the old or new house? Run errands?" We appreciate the generosity and caring so much and have taken several of you up on the offers. But this is a really tough thing to answer sometimes when your mind is reeling from the situation and you feel like you are just functioning from the hospital to the house and grateful that you have clean towels in the morning. John's diet has been so greatly restricted so it is hard for people to cook for his renal and nutrapenic meal plans and he has now spent almost 5 of the last 7 weeks in hospitals so I eat a lot of cafeteria food and protein shakes. My normal answer is please just pray for his healing and comfort (and I don't ask for prayers lightly. Faith has been a very important component of this 13 year journey.)

I finally have thought of something that most people can do no matter where they live that would mean more than any of you know. Give the gift of life that so many have given John over the last several months. 

Give blood. Give plasma. Register to be a stem cell match. Consider being an organ donor. Volunteer at a local blood drive.

Due to the agressive nature of John's disease state now, his body has struggled to make enough blood cells and platelets to keep him functioning. He has required several transfusions of blood products each week just to live with the hope that his system will be able to do its own thing after the reset of his stem cell transplant. He is getting 6 units of plasma and already had a few units of platelets just this morning. And they are still considering some whole blood later today depending on the next round of labs.

He also has just started on dialysis in the last month and sees so many people at the dialysis center awaiting the hope of a new kidney. Unfortunately when you are on chemo you won't qualify for a kidney transplant so the boys or I can't even give him one. If only more people would consider organ donation people who need these precious organs may have more hope.

Back to "Be Positive" - John's Status

Now what most of you clicked to find out. John has had a very difficult couple of days. As his fever has continued, his rough patch started Friday and we were very prepared for that. We knew to expect fever, nausea, diahrea, chills, lack of appetite, overall yuck! What we weren't prepared for is a change in his mental state. He started by struggling to find words, but still engaging with his care team, watching Ozark and Shark Tank, walking to the rest room, complaining about his Reds, and helping me with decisions of the house. He was answering the phone and texting. Saturday he was struggling more to speak but was aware when spoken to and he would try to answer and follow basic commands. His temps were more difficult to manage and went over 104 and frequentlly in the 103s. His blood pressure was also difficult to control. By evening he was very unaware and had periods of what they called "rigers" where he would shake uncontrollably. In the middle of the night they had called in the ICU Rapid Response team and Neurology several times each resulting in tests and speculation but few answers.

Sunday he was even further away from us and more of a concern. Finally as Jason was just coming up for a visit, John had a major change that resulted in what they thought was him seizing. The teams again descended on his transplant room and quickly whisked him off to the ICU. By the time we got down to the 2nd floor he was sedated to a state of calm and they had kicked his care into a whole new level of impressive. Now anyone who has been to the Mayo knows it is unlike anything you will ever experience. from the low patient ratios to the fridge in the room stocked with your own snacks (unless you are like John - no Doritos or Snickers), milk and homemade cookies delivered each afterrnoon to the most thorough, caring, first-in-class healthcare providers. I won't post photos because I don't know that John would want that, but he was in the command central of ICU with poles, monitors, and close to a dozen professionals all kicking it into gear to figure out what was going on. 

In ICU they have performed even more scans and tests and at least they are ruling out many of the worst things and they are keeping him comfortable and sedated. They have ruled out a stroke, brain tumor, menangitis, many types of infections, fungus, aneurysm, and blood clots. They don't have the answer yet but they are still hopeful that this is something that will reverse with time, assistance of what they call plasma apheresis (replacement) and a careful balance of therapies. He is on a ventilator for now and under the very careful eyes of an amazing care team.

One of the 6 or 7 doctors who have been in to speak with me today said he is a "glass half full" guy, but I prefer to say he took the "B Positive" pill today too. Since they haven't found the culprit of the fevers, unresponsiveness, tremoring and infection, he feels that means that the most difficult maladies to remedy are ruled out and a recovery is just delayed a bit. Now it is finding therapies to help them resolve this mystery which includes removing all of his plasma and giving him clean donor plasma, controlling his vitals, careful eyes and symptom management. They did this today and plan to again tomorrow while continuing to carefully control his system which is only 10 days old and just learning to heal itself.