Looking Back at This Difficult Week...

This has been a hard week for us. Blue has not been found, and we haves missed him in many ways. Those of you who have had pets die know what we are going through. Blue is probably our last pet, so that makes it even harder for us, and it was so unexpected. Cats are quirky, but Blue did not "take off" like some cats do.

Ron had physical therapy today. One of the walls is all mirror, and it was really the first time that he had had a full body look at how his body has changed and how he has aged through this recovery. It was hard for him.

So as Matt, one of Ron's PAs when Ron was going through chemotherapy for acute myeloid leukemia, would tell Ron, "You will have peaks and valleys...bumps in the road." We have been in a valley this week. We have had sadness that can physically make your heart ache. It is a dark place, but both of us are fighters and planners, so we have our calendars out and look ahead at what we must do and also to plan some things that we want to do. We were lucky to have had Blue for 12 years. He was a kitten that I rescued after he and his litter mates were dumped on a side road. Then out of the blue, he left us as abruptly as he entered our lives. Maybe someone else has taken him in, and he has once again been rescued. I would like to think that is true.

A Sad Day for Us

Ron continues to be on the mend from pneumonia. Yesterday we went to Coldwater , which is about a half hour drive, where he had his physical therapy evaluation at a rehab center. He will go there twice a week for physical therapy. Pneumonia kicks butt.

Then if all of this has not been enough, we have been kicked in the gut again. Our beloved kitty, Blue, has been missing now for two days and two nights. No sign of him at all, and I don't think he ever missed a meal. I have some hope that whatever happened, he might find his way back to us. We have had him 12 years, and this has never happened before. I am devastated; he was a source of joy for us every day. ..very cuddly and loving. All ready we have missed him so much.

Year Two of Recovery Begins

This week at home has been good for the soul. I now see a pattern in how the hospitalizations effect me. The stress of the visit doesn't really surface until I let my guard down. ...and that can be anywhere. So I have had my good cry which will hold me for quite awhile, and we move on into Year Two. Yesterday was the one year anniversary of the transplant.

Ron continues to recover from the pneumonia. It takes awhile. Neither of us has ever had pneumonia or even bronchitis, so we are in new territory. His weight is at a new low, so lots of my macaroni and cheese and special strawberry milkshakes are on the menu. I will be glad when he can start his immunizations next month. On Monday we will see our Dr. Mag; meanwhile a visiting nurse has come to the house twice this week.

So again, thank you for your support this year. Every message was appreciated, and every card has been saved. (sorry, kids..one more big box in the house) I briefly looked through them when I was gathering all cards in one place. I think it will be a winter project to look at them again.

Love to all, Ron & Jan

Going home....

We will be leaving Mott Hospital at about 4:30 to drive home. It is a two hour drive but might seem longer since we are so anxious to return to Gilead Lake. A nurse will visit at home tomorrow.

Kudos to U of M- Mott Hospital...

We will be back home for Ron's one year anniversary of his bone marrow transplant. What a year it has been with the first hospitalization for the stem cell transplant itself, the following hospitalizations on 8th floor University Hospital for a variety of complications, and then the last two hospitalizations at the new bone marrow transplant in-patient unit on the 7th floor of the new Mott Hospital! The BMT Clinic for regular appointments is also on 7th floor.

We wonder what "weather surprises" autumn will bring to Michigan. Both spring and summer were so atypical. Regardless, just spending it at home this year will be appreciated at a higher level.

Ron continues his recovery from this bump in the road. A couple additions were made today to help rid him of his lung congestion. He also will receive an infusion to help treat the two same persistent viruses that surfaced again on Saturday in lab cultures. Infectious disease and our Doc Magenau believe the one is a false positive. The plan is to definitely go home Monday. I did all of our laundry this morning. The family lounge is huge, has a kitchen, 3 washing machines and 3 dryers. They even provide the laundry detergent!

Yes, kudos to the care-- medical, emotional,and logistical- received here at the University of Michigan Medical Center. They call it "The Michigan Difference".

(Regarding basket ball and football, we continue to be Spartan and Buckeye fans!!)

Admission for Transplant: One Year Ago Today

No specific results from tests to report, but Ron is much better. His pneumonia and UTI are resolving with the course of IV antibiotics. (so probably bacterial infections) Numerous tests have been taken, but all reports after the original diagnosis of pneumonia from Sunday's chest x-ray and the CT scan of his chest and a urinalysis on Sunday, none have shown a specific organism. All viral and fungal tests were negative.
They have stopped one of the IV antibiotics, and he will continue with the others through the weekend, and we will probably go home Monday.

After returning home, the physical therapist has recommended PT in an out-patient facility. Ron would go twice a week, and I am starting to research what is available near home. I think these outings would be good for both of us. His strength is okay, but he will need to develop endurance and improve balance.

So things have turned around again. As a nurse once said, let's get this train turned around. Ron has had some of his favorite nurses and techs and a couple new ones. Actually, our #1 favorite RN (except for our Andrew, of course) has been his nurse quite a bit. That continuity means a lot. We are feeling safe here and full of trust that this medical team will resolve Ron's acute issues. Having his BMT doc on service all week has been fantastic.

Thanks for continuing to follow Ron's recovery.

A Few More Days..

Ron will need to remain in the hospital a few more days. At this point the two IV antibiotics that he is taking are hospital only administered ones. There have been 3 issues to address. Two are mostly resolved now. That is, the antibiotics will resolve a urinary tract infection. The second is a head CT scan showed bleeds between his brain and skull on both sides of his head. It appeared to be from a trauma 1-2 weeks ago, and a repeat CT scan Monday confirmed that it is not continuing to bleed, so neurology will do a repeat scan in a month. He is cleared from that issue at this time. Neither Ron or I are aware of any fall or head bump in that time frame. As a precaution he is receiving platelets transfusions to keep his count above 80. 150-400 is normal. His is usually around 50-60.
The work in progress is his pneumonia. The August 6 x-ray was clear. August 12 x-ray showed pneumonia in both lungs with the left lung having more. Because the pulmonary and transplant teams believe more information about the pneumonia would be beneficial, he will have a lung scope tomorrow to take pictures and draw a sample to identify the infection. They would of course like to have Ron take whatever medication will be most effective and specific for his infection. He will probably remain hospitalized until at least the end of the week and probable into next week.
I am able to stay in Ron's room; the Bone Marrow Transplant unit is on the 7th floor of the University of Michigan's new Mott Hospital.
Love, Ron & Jan

I am wired, so I blog...

In a few words, Ron is back in the hospital at the University of Michigan. His symptoms had escalated especially Thursday through Saturday, so the clinic kept in contact daily. As it turns out, he developed a urinary tract infection and pneumonia. Matt went with us to the U of M E.R. This morning. It was pretty rough with the confusion, tremors, and emotional aspect of feeling so sick and being back in the hospital again. Now he is resting so peacefully, so his IV meds are doing their work.

Ron will be in the hospital 2-3 more days. He is in the Bone Marrow Transplant unit on 7th floor in the new Mott Hospital. It is spacious and high tech. Luckily, his primary BMT doc is on service this week for in-patients. He knows Ron's story, so that makes it incredibly easier. When the third medical person in the ER said, "So what brings you to the ER today?" I thought that I was going to have a meltdown. Overall, they started his bloodwork and other tests quickly, and also started his treatment before moving him to Mott. The hospitals and clinics are all connected, so they just moved him in his bed. Dr. Mag examined him and talked to us as soon as we arrived in Mott, and he will see him again in the morning.

Bump in the Road: Day #350 after Transplant

Up late watching the Olympics and cleaning the house because the Amish cleaning ladies come tomorrow.(Some of you will understand this cleaning before the cleaning ladies.) It will be all worth the late night by tomorrow afternoon. I can just try to relax and enjoy having things organized and a clean house and also look out at the newly mowed yard. Thanks, George!
We did make our overnight trip to Ann Arbor. Ron's recovery is at another bump on the road. He is much weaker and has poor balance. On Monday they did an EKG, urinalysis, drew blood to test for several specific more serious viruses and blood infection. They also took chest xrays and did his regular blood tests. At this point nothing has developed in the cultures, and the virus tests were negative. The chest xray was clear. So that is all good news except that we still don't know what is causing his symptoms. It could be a run of the mill virus but is affecting him more seriously because of his compromised immunity. He has slept a lot today, and has not had a fever. I hope tomorrow is a much better day. His regular blood tests were okay...consistent with two weeks ago. It is a stressful mystery.

Transition just beginning...AUGUST!

Time for a weekend update! We enjoyed our week without traveling to Ann Arbor. Also it is not difficult to feel the beginning of transition within our family. August is always an eventful month, and when I flipped the calendar, I could only imagine how things will be different by the end of the month. September and October are two of my favorite months, especially living in Michigan.

Ron's doctor appointments start at 7:45 tomorrow morning, so we are traveling to Hampton Inn North in Ann Arbor this afternoon. I am concerned that he could be slightly dehydrated. He was wobbly yesterday, and the physical therapist had come to discharge him from home services, but she did not do so because of his unsteadiness. When he had a central line, I could give him IV fluids, but I don't do poking for an IV line. I know that he is not drinking enough, and I have been charting and using a timer to take and encourage him to drink 4 ounces of water every half hour when he is awake, but as they say: "you can lead a horse to water but..." sometimes he will drink Pepsi; he loves orange juice but because of his cGVHD of the mouth can't stand the acidity. If he needs fluids, they will be able to do that at the clinic tomorrow.
Love to all, Ron & Jan