Friends are welcome to visit.

We will be at BG Manor indefinitely. There is no timeline in place. If you come to visit and the timing is not optimal, we can visit in the lounge directly across from Ron's room. I have a bed in Ron's room, and can sleep here overnight. At this time, that is what I choose to do. Also, I prefer to be here at mealtime to help him eat. He is resting much better with no monitoring done most of the night. No blood tests or IV meds being given. He is not taking antibiotics or antifungal meds any more.
As kind as everyone has been some things are humiliating and hard to explain to him, so he told me that he was miserable.
I visited my doctor today, and my blood pressure is well under control. My bloodwork and urinalysis in the U of M ER was normal. The stress had affected my BP. More tomorrow. i need to catch a good night's sleep. Thanks for following my blog and sending email messages. I hope to eventually respond to everyone.
Love, Jan

"It's different this time."

Ron had told his medical team at U of M that "it's different this time." Dr. Mag told him that he should be so proud of his amazing fight, but that there were so many things affected this time. Even after Ron's hospitalization in June, I had told the kids that I felt like there would just be one more time...that he wouldn't be able to come home next time. Now it is the next time. I feel at peace that we did everything we could. I so appreciated the time that Dr. Mag spent with us this past week. The discharge nurse, social worker, PA Brittany, the nurses, everyone was comforting to us. Emily, the night nurse, talked to Ron as he rested and had a calming presence.
Ron is resting comfortably. He is quieter today but visits with us and watches basketball. He has said that it hurts deep within his lungs when he coughs. He doesn't really understand his physical limitations, so it is difficult to explain why I can't just help him get into the bathroom with his walker. They use a lift to move him from bed to chair.
Yes, it's different this time. I know that I can no longer care for him at home.

Back in BG

So very hard to say our good-byes to our Bone Marrow Transplant Family today. We had a lot of hugs and of course, some tears along the way. We have been welcomed at Bowling Green Manor, and hospice has also admitted Ron. I feel like things have gone well. Dr. Wojo, a family friend and Andrew's father in law, is Ron's doctor. He knows our story.

Bowling Green Manor and Comfort Care

Ron is sleeping peacefully this morning. EKGs, heparin drip, frequent pokes to monitor heart enzyme levels, blood sugar pokes have been stopped, so he can sleep for a period of time. Tomorrow, Friday, January 27, he will be moved to a skilled nursing facility with hospice services in Bowling Green. Bowling Green Manor. His IV antibiotics will be done, and he will receive comfort care. Ron has told me that he feels better about yesterday's difficult conversations with Dr.Mag and will enjoy the time he has left. He does have some confusion but can carry on conversations and wants to watch college basketball.
If you would like to send him a note, our Gilead Shores Drive address in Michigan will be delayed, but currently:

1509 Cogans Lane
Bowling Green, OH 43402

I see many people have read the previous blog, and I feel protected by your positive thoughts and prayers for both of us and our family.
Love, Ron & Jan

A Brief Update

Ron has been hospitalized since Saturday morning. He is very sick and has spent part of his time in ICU. His kidneys are failing, and he has had a "small" heart attack. He had been slowly declining for a few weeks, and he also had a fall last Thursday. He did not hit his head, but the impact with the floor injured his clavicle, shoulder joint, and a rib. That has been painful. Because his kidneys could not metabolize narcotic pain medication, he had serious consequences that required Narcan to reverse. Niccole and Cale have been with me to help understand how to move forward. My sister and brotherinlaw are here in Ann Arbor and other family members are coming tomorrow. I am surrounded by family and our friends in the Bone Marrow Transplant Team. Ron's transplant doctor, Dr. Mag, is the doctor on service for the BMT inpatient hospital wing, so that is comforting to have him as Ron's hospital doctor.

Happy New Year!

I used to try to sum up a year in one word. That would be a challenge this year....or maybe that is the word: challenge. It is a challenge to accept the changes in our lives, especially since early June when it was necessary for Ron to start being on oxygen 24-7. His lung damage and ongoing control of the infection in his lungs has made the need for oxygen a permanent change. In spite of the complications that has caused, Ron remains amazingly positive as you can see by his New Year Day's note to me.

Ron has had another immunity infusion this week; it seems like they do help him fight off sickness. He has had 2 separate days the last 6 weeks when I thought an ER visit was on the threshold, but then both times he improved after a day when his oxygen requirement had bumped up significantly higher. He doesn't get a fever, so I don't have that as a determining factor; a fever would actually make the ER decision a lot easier! He doesn't complain, and of course, he doesn't want to go.
Overall, we were able to enjoy our usual holiday celebrations, and now we're settled in to the quiet weeks following what felt like a busy December for us. January holds a strange combination of letdown and relief.