Check, check, check

Washer, dryer, refrigerator, dishwasher, miscellaneous household items--check! Things are quite well set up in our Bowling Green condo, and we have made Ann Arbor trips on four days from here. The plan is working well. The trip is consistently 65 minutes. Ron is doing pretty well in his recovery from May's flu, pneumonia, and fall. He is walking some without the walker but does use his cane. He has PT at the hospital here in BG during the weeks we are here. He has a chronic cough due to permanent lung issues, and because he has been on steroids so long, he has deconditioning of muscles and frequent bruising.
Mentally his deficit is in executive functioning....the mental task related to help planning, organizing, paying attention to and remembering details, and managing time and space. This is a permanent change in addition to some quirky behaviors and personality change...yet much is the same too. He continues to be a complex man.
Ron's immunity was checked this week with an IGG bloodtest, and he does not need his next IVIG infusion yet. That was a change in his trend, so we are hopeful that he might be starting to get more immune support from his bone marrow.
It has been quite awhile since I have felt like we are back to just "grinding". I will take that!
The caregiving service is working out well. She comes on Monday and Friday afternoons, and I run errands and have time to do some socializing too. Looking forward to more of that!

Happy 4th of July

Thanks to all who have come before us to make the American life style possible! And thanks to all serving now who sustain our way of life. We are so very grateful.

Peaceful Gilead Shores Drive...

What is it about being by the water? When we first arrived Saturday, all I could see was yard work that I needed to do! Trimming mostly, but I enjoy that, and it felt really good to ride the yard tractor and break a sweat doing some outside work. Good for the soul; my mood went from bittersweetness to peaceful. Matt is here at Wee Cottage, and the rest of the family returns tomorrow. Niccole and Cole will travel tomorrow…hoping they will arrive to watch part of the World Cup game with us. Go USA!!
Today I am doing some indoor work, too, and have promised myself an afternoon nap. Ron's eye is improving. The swelling is gone, and the redness is fading. It was a doozie. Both of us are settling in to enjoy what the next few days bring.
Love, Ron & Jan

Our Plan

I think our plan is coming together! It looks like our weeks in BG will also be our timeframe for all appointments. Hopefully, I won't need more orthopedic appointments, but any physical therapy for Ron and me will be scheduled here in Bowling Green. My future dentist appointments, car servicing, etc. will be done here in Ohio. Then when we are at the lake, it will be a vacation from all of that driving and appointments.
Ron has speech evaluation tomorrow to help with thought processing. I am on the fence about doing that until I see what that means and what his needs are. Then I have caregiving time in the afternoon and our new dishwasher is supposed to be installed.
ECP light treatments had a glitch this week. Ron bruises easily due to being on steroids so long. His skin is thin and tears easily. Along the same line, coughing can cause eye bleeds which happens occasionally. He developed an eye bleed in his right eye..the one that has vision, so after being seen by 2 at Mott, instead of ECP on Wednesday we spent two hours in Kellogg Eye Center in AA. We did not get back to the condo until 8:30 last night and had to leave at 6:45 this morning for a treatment as he had been cleared to do so. He did see his regular eye doc, and of course, ECP nurse and PA did not want to make the final call because risking vision in that eye too would be horrible. Along the way in Kellogg he bumped his hand, and we had a new skin tear to deal with. All is under control now. It felt wonderful to get back to BG; it is a 65 minute trip. I loved not having to pack but learned to always carry at least a day's worth of meds with us and his first aid kit..beyond just bandaids. We probably would have bought tooth brushes and stayed at the Hampton and just slept in our clothes, but I didn't bring meds. Some of the things I've done I could not have imagined before...like going to the orthopedic doc last week in my bedclothes!
Rambling,
Jan

Abby's Sunflower: Summer 2013

I have planted seeds from Abby's sunflower at Gilead Lake and will plant some here in BG tomorrow.

An Eventful Week

I hardly know where to begin. I went back and read my last blog entry to see where I had left off. Cale had set up some services to help us, and Dr. Mag had given us the required referrals at Ron's last appointment. We now have a "helper" from Home Instead two afternoons a week 1-5 PM. We also have a case study nurse locally for palliative care as needed-- a good resource when issues change or arise.
My good knee became my bad knee as the week progressed due to overdoing during the move and condo set up. By Tuesday evening, I could not bear weight on it so texted friend Jim in the middle of the night requesting his crutches Wednesday morning. He dropped them off early, so I could get around. Doc Wojo made arrangements for me to see an orthopedic doctor that morning. Ron and I are quite the pair! He used his walker, and I crutched into the doc office. After RICE rest, ice, compression, elevation, and a shot of cortisone in my knee, both knees are pretty much normal again. Neighbors and friends have helped us with various things, and when our refrigerator, washer, and dryer are delivered tomorrow, things will definitely be under control. I continued to shop for things we needed but went mostly to Meijer where I could drive a cart and continue to rest my knee. Today I am crutch and cane-free. New appreciation for Ron and others who have to use any device to help walk.
Having help a couple afternoons a week is liberating. Primarily she makes sure Ron stays safe and does light housework. On Wednesday after my doc appointment for my knee, I went to bed to ice and elevate, and she fixed me lunch in bed and cleaned while I napped! On Friday when she was here, I set up PT for BOTH of us at the local hospital, ran errands, and ran into Liz, the teacher who taught next door to me at Kenwood. It was wonderful to visit with her...in the McDonalds parking lot where we both had gone to pick up coffee! This weekend has gone by quickly as I have had time to sleep more (guess that is why I am still awake tonight) and do little things around the home. I am looking forward to spending some time pulling weeds in the landscaping that is beautifully done. I hope it is not too late to plant sunflower seeds from the big sunflower that Abby gave me to grow last year. It grew from 6 inches to way over six or seven feet high!
I am content here and looking forward to connecting with more friends during the weeks we live in BG. It is okay to visit us! --in fact, the WELCOME mat is out!
Love, Ron & Jan

"Our Pond" - View from Kitchen Nook

In the picture below of the entrance to Cogan's Crossing, our home-villa-condo is in the background.

Home Sweet Home BG - A Good Move

We spent our first night back in Bowling Green! The move went smoothly; Gary and Vicki arrived at the Villa before we did in case Directv came at noon, and they also brought a carload of belongings which they had put away. The movers started to unload about 12:30, and we arrived 15 minutes later. Perfect! Ron was soon resting in his recliner, and I watched Vicki work on the kitchen from my chair. Anne and George are bringing our wall pictures and a few other things on Thursday. By then I hope to have a washer, dryer, and refrigerator!
It is a peaceful setting here. There is a large pond with fountain outside our slider in the kitchen nook.

Crazy Busy

May has been true to form as an extremely busy time, even in retirement! We are looking forward to spending time in BG in our new condo, but it has been a challenge to make all arrangements and pack, etc. The plan is coming together. My sibs and spouses have helped with packing and are helping with the move at both houses.

Condo Pictures from Early May

June, oh, my!!

I have been on information overload this week. We have realized that we are at a transition point in Ron's care, so Cale met us in Ann Arbor on Wednesday and Friday to help with Ron's appointments with his transplant doctor, Dr. Mag, and a new Physical Medicine and Rehab doc, Dr. Smith. (Cale was surprised how young both of them look.) Ron will have another head MRI June 9, and then we may or may not have new information from his neurologist. Ron also has a pulmonary doc and an eye doc in Ann Arbor. As has been the case in the past, after a hospitalization for pneumonia, he loses some ground physically and cognitively. He doesn't seem to go back to where he was before the hospital stay. The difference this time though is that he is breathing much better and says he feels better than he has in weeks. The parainfluenza type 3 was hard on him. The non-Ron behaviors continue with new ones occurring.
During the last two weeks at the lake before heading to our condo, Ron will have at-home PT and check ups by a nurse. Dr. Smith wrote scripts for out patient PT and speech (to work on thought process) which we will start in BG if Ron wants to. He has started to show some displeasure with all of the many appointments and doctors.
May was very busy with looking at and buying a condo, selling Ron's truck, starting to pack things to move to the condo, 6 days in the hospital, appointments for Ron on 5 other days, yardwork begging me to get outside, arrangements for dock and pontoon and movers, etc. lots of mental exercise for me!! Thank heaven for email of documents and electronic signatures!
I have planted some flowers by the house as well as 5 tomato plants. We are mowing over my garden area behind the garage, except for the flowers that I have out there. I have known all winter and spring that a garden would not be possible and can accept that change.
Love to all of you,
Jan

Back home at Gilead Lake

Ron needed oxygen for a few hours Saturday afternoon, so we couldn't come home until Monday afternoon. After reviewing everything, the doc thought the IV antibiotics were the best treatment, so I am giving him cefapime IVs every 8 hours. I have done this several times before, and I use his central line.
A nurse has come to our home twice and a PT once. The PT thinks that I should write a book. We will be back in AA 3 days next week. Physical Medicine is going to evaluate him for more intensive rehab.
It is exhausting to be in the hospital 6 days. Then you are hyped up to be home and do too much the first day. I am catching up some with naps and into the routine of new care for Ron. He has improved some the last two days.
Niccole surprised us by arriving on Thursday for the long weekend. I have put her right to work!
I am working on making the arrangements for a moving company to transport some of our belongings to the condo in BG in mid June. The condo will give us more options for where we go from here. Lots of unknowns.
Love,
Jan

Getting answers, making progress

Ron's lab cultures have grown a viral and bacterial "issue". He had parainfluenza type 3 which contributed to the pneumonia developing. The sputum sample has pseudomonas which is an antibiotic resistant bacteria. To treat the respiratory flu, he had an infusion of antibodies-- the one from 1000 donors. Thank you blood donors!! There is not a specific antiviral med for this type of flu.
For the pseudomonas, they have put him back on IV cefapime which is an antibiotic that must be given in the hospital. The bacteria culture is now being tested to see which antibiotic in pill form will best treat it; that result should be back today, so now they are saying he can probably go home Sunday afternoon. His coughing and breathing are much improved. The rapid heart rate, croupy cough, pneumonia and low oxygen saturation were complications of the type 3 flu. He has not needed oxygen the last 2 days.
We will need to come back to AA for ECP light treatments next week. He can't have them when sick because they alter the immune system. The balancing act continues. I will feel okay about going home Sunday, especially since he will be checked next week. He does not complain of rib pain but does take an oxy at night to make sleeping easier. He has not had a fever at all during this illness. Very stoic as you might imagine. Me, too; I guess or maybe getting somewhat numb to all of this.

Quick Update from AA

On Tuesday afternoon we arrived in AA after the closing on our condo in Bowling Green, Ohio. Within a half an hour, a storm blew in with 65 mph winds. That night breathing difficulties which had been escalating worsened. Early in the morning Ron fell off the curb in a parking lot; two men helped me get him up to a picnic table. He refused to go to the hospital until his scheduled appointment at noon. He was admitted because of the fall and his need for oxygen.
Ron has been undergoing testing, and he has pneumonia again and broke four ribs in the fall, so he is taking IV antibiotics and has responded quickly to treatment. He really does not complain of pain from the rib fractures even though there is some displacement. He rarely mentions any discomfort except for skin itching.
So we will be at Mott Hospital where the bone marrow transplant clinics and in-patient hospital for BMT patients - adult and pediatric- are located. Ron will be a patient here for a few more days.

Change

We have been making some changes. Today we sold Ron's truck because for some time he has not been able to drive. He did some "country driving" last summer which was questionable due to his poor vision and reaction time. Also, I know that we will continue to need more assistance with Ron's care and will continue to make trips to Ann Arbor for treatments every other week. I have adjusted to just letting some things go. Ron gets frustrated with my over-mothering. Usually, I let him choose his clothes, decide when to shave, give less comments and direction concerning clutter around his chair, food on his clothes, etc.
On Tuesday we will be closing on a condo in Bowling Green. We will be able to make day trips to his appointments and stay at the condo. It will be wonderful to see Cale's family much more and lean on our Bowling Green friends. We are keeping our lake house in Michigan; we are closer to our siblings here and are in the area where we grew up. Time wise, we will probably be at the lake more days during the warmer months. We will stay in BG during AA weeks and in the winter.
I had my first physical therapy session today, and my recovery is going very well. I expect my knee to be "totally normal" by the end of May.
Put grape jelly out today because I had seen an oriole. Amazing! They love it and such a special sight to see! I finally put out my hummingbird feeder and am waiting patiently. We have numerous yellow finches coming to our feeders, too. Loving nature's surprises...the two deer I have seen frequently were behind our garage today. Very pleased that the pump and well I had drained and winterized on the garage side of the road is working again. I held my breath as I turned it on!

To Honor Ron...

a Relay for Life photo sent by Gregg and Darlene

Our plan came together!!

Don't you just love it when a plan comes together? I do have to admit though that I had more discomfort than I had expected the first 24 hours after the scope. I had thought that I would immediately be able to crutch around the house. Not so, but the pain meds covered the discomfort. So glad that we have had around the clock help for 3 days and a nurse visiting 5 days. The hospital "gave us" an ice water lower leg compression cuff that circulates cold water. It is electric, and the ice water tank has to be changed about every 4 hours. It alleviates pain and swelling. Everything is so much better today, and I am able to crutch around. I am totally taking advantage of all the great support we have had. Our siblings and spouses are the best!!!

Staying Busy!

Thought that I had better let you know that we are doing okay! I have my knee scope tomorrow and have been busy making all arrangements for both of us! Our siblings are going to take care of us. We have also been to Ann Arbor for light treatments and Dr. Mag appointment. Things are stable, and Ron had an immunity infusion, too. During this busy time, we have been looking at condos back in BG. More on that later.

Great to see Ron outside!

It has been 70 degrees the last two days! Ron wanted to go outside today and walked around the fenced-in garden area. He held onto the fence, used his cane, and stopped to rest 3 times, but he did it. I hope this is the beginning of a new trend. He also watched me clean out the asparagus bed.
It was a loooong winter. He had his 75th extracorporeal photopheresis light treatment last week; the treatments help to counteract his over zealous bone marrow which attacks his own body. Chronic graft versus host disease is like an autoimmune condition.

Welcome to early spring!

This was an Ann Arbor week. It didn't turn out as routine as we thought it would be. Ron has his blood draw appointment first, and when he pulled up his shirt because they draw from his central line which has 3 tubes, one line had blood in it, and there was dried blood on his chest and all tubing. Long story short, that tube had a hole in it next to its clamp, so he went into the OR in the afternoon and had an all new central line placed. Routine to them, not so much for us. He has had chest bruising and tenderness but about back to our normal now.
In spite of that experience being tiring, we decided to go ahead with our plans to travel to BG the next morning to see a condo to help us get a reference point for what we might buy or rent there. No crystal ball but as we might continue to need more help and know that we will continue to travel to AA frequently, a home base in BG in addition to Gilead Lake makes sense. We are excited about continuing to explore that option. It is a one hour drive from BG to AA, so visits would not have to be overnight.
Ron's appointment with the BMT doctor did not have any surprises. His medications will stay the same, told Ron that he cannot drive (of course....the difference being that Ron seems to be accepting now that he will never drive again) told us that nothing can be done about his loss of teeth with his current health status, and suggested that we move ahead to have the serum eyedrops made. Ron's blood will be a part of the serum formula.
It is an absolute delight to have the lake thawed and the first spring flowers starting to bloom. Our temperatures will go up and back down but no more extended frigid weather. Yeah!! I love getting back outside for some yardwork. Happy spring to all of you!