Hanging in...

We have been home a week+ from the hospital and made a one day trip back to AA for a check up. Progress is slow, but Ron is moving in the right direction. So yes, we are thankful as the holiday season is quickly approaching. Some lighter moments will be greatly appreciated!
Our new granddaughter will be arriving in about two months. I love thinking about having a new baby in the family! I am hoping that we will be able to see more of all our grandchildren in the next year.
Hope everyone is planning a happy thanksgiving celebration and ready to just enjoy a break from the fall routine...whatever that might be for you.

Remembering GG: Ron's Mother

www.patience-montgomery.com

Esther Ann Hover
GG was a strong and sometimes (okay, more than sometimes) feisty woman who started living on her own in high school. She never lost an appreciation for family and her life experiences. Having been a child during the Great Depression, she was frugal: I can remember seeing her put a small amount of spilled salt back in the salt shaker. As Andrew recently said, she made a real impression on everyone. (Abby frequently asks about her and remembers her in her prayers.) I think she made an impression on Abby and others because she was so real.

You can read her obituary on the above link.

Settling In at HOME

There's no place like home. (Especially your own bed!) eleven nights away from home; well, that wasn't planned. When Ron is in the hospital, I stay in his hospital room which meant 7 nights in a recliner and a couch-- not too bad actually. I want to feel completely informed about his care and issues, and he requires help with many things.
This round of infection has kicked his butt. It is more complicated than his January pneumonia which was MRSA staph. In addition to MRSA, He now has a second bacteria and fungal infection in his lungs. The treatment plan is underway, and we will get through this too. Like January, I anticipate some permanent change.
A visiting nurse came today, and Ron will soon start physical therapy at home. He will transition to out patient PT in December after he regains some strength and the infection clears up. He has lost about 15 pounds.
I have napped today, done laundry, and organized the medications schedule. There were several changes, so I am using a spreadsheet again to chart.
Blue was so happy to see us! He is on my lap now as I write. Relatives who will take care of your cat and clean the litter box are something special.

Going Home Tomorrow!

Things are moving into place, so we can go home tomorrow afternoon. Ron is not receiving any IV meds as of this afternoon. We will need to return next week, so he can have bloodwork and a clinic appointment, and we are still hopeful that we can travel to Virginia for Thanksgiving.
At this time including the appointments scheduled for December, Ron will have had 90 days of medical appointments and care of various types at U of M Hospitals in 2013. As Ron would say, "that's a big Jimmy T. OH, MY!"
Tomorrow morning I will go to the Cancer Center Pharmacy to pick up new meds and refills, and Dr. Mag is taking over in-patient service, so that will be good to have him as Ron's discharge doc. We hope to be home by late afternoon, and Gary (my brother)and Vicki will be there to help us unload the car and settle in at home. Rick (Ron's brother) and Tammy have made arrangements for GG's memorial service which won't be held until January 18, 2014. Her obituary will be in the Coldwater and Jackson, MI (Citizen Patriot) newspapers soon.
Love,
Ron & Jan

11-12-13

Ron continues to improve, and tomorrow they will start changing his IV medications to pill form. Dr. Couriel didn't want us to have to do IV antibiotics at home, so Ron will likely be discharged on Friday. That way they can observe him a couple more days, and the home plan for a visiting nurse and at home physical therapy can be in place. The cardiologist has discharged him from their service, and the heart monitor is gone. He has a very slight heart rhythm irregularity that barely falls out of the normal range, but it was aggravated by the respiratory distress. No intervention is needed.

Ron's mother passed away today. She has been living in an adult foster home for four months following 3 falls, hospitalization, and rehab center for a month. It was not unexpected but still hard to hear. Ron and I had visited her last Wednesday morning from AA before Ron's doctor appointment that day. I am so glad that we made the trip.

Testing Testing

This was a busy day. Ron does not require breathing treatments during the night, so fewer sleep interruptions was (were?)appreciated. Ron started the day by a trip to the Cardiovascular Center for an echo ultrasound test of his heart. The bloodwork that might indicate a heart related event was negative. He is still on the heart monitor, but there is not a significant change from normal results. The first EKGs showed irregularities that were aggravated by respiratory distress.

Now he is just on an inhaler as needed. Twice a day seems to be what is needed. He is not on oxygen any more. His BP is normal again, so overall, he has responded very well and quickly to treatment.

His lungs are fighting infection. His staph infection in his lungs is MRSA --same as in January, and this time in addition to that, he has pseudomonas and an aspergillus fungal infection.

The PT came today to access his physical therapy needs. He will need to work on strength again especially in hips and thighs and also work on balance. He will resume ECP when his infection is under control, so we proceed and have a feel for the direction we are headed. Controlling a chronic illness is now a shift in thought for me although that has been the case for quite some time.

Tracy, his PA from the first rounds of chemotherapy in 2010, first remission, and chemo during relapse which led up to the bone marrow transplant, visited today. So much has happened in the past 2 1/2 years, so many changes in Ron. It was a tearful visit for me.

Bloodtests are being done to check the absorption levels of the antibiotics and anti fungal to see if the dosage is correct for him. This can vary person to person. The treatment plan needs to be in place before we can go home, and the aim is still Wednesday. The testing is wrapping up...I think.

Love and thanks for the prayers, good wishes, and positive thoughts that I feel coming our way.
Jan

Sunday - 4th day in hospital

We have more information today. Lab tests have identified two bacteria in Ron's lungs-- staph aureus which could be MRSA again and pseudomonas. He was already on IV antibiotics that will cover them, but they did up the dose. Today a doc from cardiology came to examine Ron and discuss some abnormality in his EKGs. He has now had 4 EKGs done, and the change is not severe but needs to be investigated more. He is on a heart monitor to gather more information and might have an echo test tomorrow. Dr. Couriel has been in to see Ron Saturday and Sunday, and he will be on service for in-patients this week too.
We walked in the hallway today, and he does feel better. We have enjoyed some football and our naps too. --still catching up from our all-nighter on Thursday. I sleep in Ron's room..not too bad actually. We think this is the 14th hospitalization since his diagnosis of AML in April 2010. All of his rounds of chemotherapy required hospital stays; then there was the transplant itself and many complications. Over 200 nights in the hospital now.
We had a nice visit from Cale today. He can give his sibs his perspective of things here in Ann Arbor. :-)
Love,
Ron & Jan

Making Progress

Ron is much better than his first night in the hospital. He has always responded well to treatment. He is on a wide range of antibiotics until the bacteria in his lungs is identified. It could take 2 weeks to identify the fungus. They are also checking for viral issues. His need for supplemental oxygen is almost resolved already.
Besides the lung infection, it is believed that he had a bad reaction to dapsone that was started 6 weeks ago during his gvhd flare-up. It altered the iron in his red blood cells so they could not carry enough oxygen. As a result, in the past month his heart rate has been over 100 and he has had high blood pressure which was a new issue. Also, at appointments, the oxygen level was registering low until he would take several deep breaths. Following treatment with methylene blue (he is peeing Michigan blue now), this condition -methemoglobinemia- is reversing and so are the symptoms. I add this medical gibberish for the ones of you who have medical background! To check that oxygen level in his blood they use a gizmo that attaches to the end of a finger, and they also have done arterial blood gases draws which are not a walk in the park. The oxygen carrying red blood cells have reverted back to normal iron and his other vitals are back to a more normal range.
During the first night when they nearly admitted him to ICU, his BP was 184/100, his respirations 40 per minute, his heart rate 115, and he was on 80% oxygen. When they ask about intubation and CPR wishes, it gets scary. It truly was amazing how quickly his condition improved as the treatments started. The bronch has provided good information but the procedure itself exacerbated the issues.
Ron is in an isolation room on the ward where BMT patients are admitted to Mott Hospital (U of M). His BMT Clinic is just down the hall. Because of precautions I cannot go in the common areas in the inpatient area. That includes the laundry and lounge facilities, so Ron's tech is doing our laundry today for us. Bonus. We had packed to go home on Thursday, so we needed some things laundered. However, I knew someday that it would pay off to always pack an excessive amount of underwear for both of us.

Too many details; I know, but this blog is also a record of events for me. :-)

Pneumonia

Ron has been hospitalized for pneumonia. He saw a pulmonary doctor on Monday because the CT scan showed probable fungal infection. She ordered a bronch scope on Thursday. He has also had another head MRI and light therapy. During the prep for the bronch, I was told that he probably would not be able to go home because he was requiring oxygen. His need for more oxygen as the evening progressed and a fever were symptoms of his pneumonia, but they also think he had a medication interaction that caused his blood to carry less oxygen. So he was breathing rapidly and required quite a bit of oxygen during the night. He is much better this morning and afternoon, and his oxygen requirement is about half of what it was. He will be hospitalized into next week. He has bacterial growth in his lungs as well as fungal, so his medications are being adjusted to cover those needs. His MRI showed no progression in his brain lesions. Yeah!
Being in the hospital is exhausting!! It didn't help that we were awake and stressed during most of the night.
Getting great care,
Ron & Jan

Really?? November?

October seemed to pass quickly, and this morning after 3.5 inches of rain and stout winds over 2 days, it was amazing how much it looked and felt like November. It was a dramatic shift.
Ron and I made a day trip to U of M clinic in Canton for CT scans of his sinuses and lungs. The results show probable fungal infection in his lungs, so the IV pole went back in the closet, and he was changed to an anti fungal that will give better coverage. After a few days of that and several episodes of hallucinations, the IV pole has returned, and I will resume the infusion of the anti fungal that has less side effects. He realized the episodes were hallucinations and did not find them fearful. (Music and TV playing when his eyes were closed that would stop when he opened his eyes and people in our bedroom who would disappear when he opened his eyes but felt very real) he had one nightmare about a tsunami.
We will spend some time in AA this week for an evaluation of his lungs and resuming ECP every other week.