A nurse once asked me if I waited for the next shoe to drop, in regard to numerous complications that Ron has experienced. It is a delicate balance to not worry too much while keeping my guard up just in case. Ron's kidney function has returned to normal levels as indicated by today's bloodwork. That had been a worry for me. A physical therapist works with Ron in our home. A nurse has been following up with phone calls to check on his recovery from the lung infection, so he is moving in the right direction.
I won't give you all the details, but my Ford Edge is at the dealership to replace the touch panel of "my Ford Touch". My hazard lights came on at random times and could sometimes be shut off by touching the dash in random places. Apparently, they turned themselves on in the garage and caused a dead battery. My car was jump-started this morning, so we could drive to Coldwater, and then the dealership took Ron and me to the lab at the hospital and later picked us up with a loaner car. Our pontoon boat also had a dead battery; it started this afternoon after brother-in-law George had hooked up the charger for me earlier today.
I just mainly wanted to blog to let you know that Ron's recovery is going well! The other distractions keep things interesting.
Monday, June 29, 2015
Saturday, June 27, 2015
Meanwhile back at the lake...
We will spend most days at the lake the next 4 weeks. During this time our other 3 kids' families will spend some time here. Andy, Lisa, Abby, and Lily have returned to Germany and are taking trips during Andy's leave. They will be stationed in Germany another year.
Today I worked for awhile out in the yard; it made me feel sad to remember how my garden and flowerbeds were the first 2 summers that we lived here. (Summer 2008-April 2010) Since then I have modified my expectations to allow me the time and energy to care for Ron. That's just how it is.
We have lost ground this month; our 3 week intervals between appointments only lasted 2 months before the setback with Ron's hospitalization. After 3 busy medical weeks, finally we will have an Ann Arbor-free week next week. Ron will have bloodwork done at our home-hospital Monday. He had abnormal numbers in the tests regarding kidney function, so now that he is eating and drinking better, hoping they have normalized.
I am anticipating 2 days to hang out at home this weekend. It looks like I will be putzing around inside since we have a cold rain! I am okay with that...probably a good thing that I have always been a homebody at heart!
Today I worked for awhile out in the yard; it made me feel sad to remember how my garden and flowerbeds were the first 2 summers that we lived here. (Summer 2008-April 2010) Since then I have modified my expectations to allow me the time and energy to care for Ron. That's just how it is.
We have lost ground this month; our 3 week intervals between appointments only lasted 2 months before the setback with Ron's hospitalization. After 3 busy medical weeks, finally we will have an Ann Arbor-free week next week. Ron will have bloodwork done at our home-hospital Monday. He had abnormal numbers in the tests regarding kidney function, so now that he is eating and drinking better, hoping they have normalized.
I am anticipating 2 days to hang out at home this weekend. It looks like I will be putzing around inside since we have a cold rain! I am okay with that...probably a good thing that I have always been a homebody at heart!
Friday, June 19, 2015
Oh, my...
Okay. I'll say it; I am weary! Both of us are looking forward to the next 3 days at home in BG. In the last 12 days, 7 have been in AA. Ron has been seen by a physical therapist,Dr. Mag and Tim PA in the BMT Clinic, and his eye doctor, Dr. Mian, at U of M. Finally, we have made the decision to have serum eyedrops made; that is how we spent today. They cost about $200 for 45 day supply, but it will be so worth it if Ron finds some relief from his burning and itching dry eyes. The GVHD has caused the dryness in his mouth and eyes. He has lost his teeth and the vision in one eye since his transplant. His vision in his good eye has declined this year, but Dr. Mian thinks it will improve some with the eyedrops.
About the eyedrops: 18 vials of blood were drawn after an eye exam at the Kellogg Eye Center. At Kellogg,they are spun in a centrifuge, packed in ice, and then we took them to a specialty pharmacy lab in Ann Arbor. Then we had 3 hours to kill until the eyedrops were made. They had me look through a window where the pharmacist was dressed in a hazmat-like suit and worked with arms extended into a sterile box. The tech talked to him with a walkie talkie. Now we have 14 little bottles of serum eyedrops that are frozen, and the bottle that we are using is kept in the frig and good for 3 days. Ron already thinks they have soothed his eyes.
About the Physical Therapist: Ron will have physical therapy twice a week at home. He is weak, and the PT thinks that he will need about a month to bounce back to where he was. He suggested buying another walker, so Ron has one on both levels of our house. Ron is quite fragile, and a fall would be bad, of course. That purchase was made during our down time waiting for the eyedrops.
About the Dr. Mag appointment: Ron is dehydrated, and the IV antibiotics I give him twice a day are hard on kidneys, so I am nagging him about drinking. I have reminded him that if he falls and breaks something that I will not be able to take care of him. Over all, he is very careful, but he needs to drink, drink, drink. The belly shots of Lovenox are in the last month--the 8th month. In July he will change to zarelto, a pill. I don't know which one of us is more relieved. His lungs are still junky in the lower lobes, and it is probable that he will periodically have a lung infection or pneumonia. He takes 3 antibiotics, an antiviral, an antifungal, and uses 3 different inhalers to keep his lungs working pretty well. He has not had to have oxygen at home yet. Ron rides in a wheelchair at all of his appointments. I just pile my stuff on his lap!
About us: we are doing okay. It is great seeing the grandchildren in the summer. We are very proud of their good citizenship, and academic and athletic accomplishments, and we enjoy a myriad of personalities. I wish that we could be a larger presence in their lives, but our situation with Ron's medical needs and how they are scattered limits us.
Our villa in BG has worked out very well for us. We love both of our homes, and feel very fortunate to be able to have both. With Ron's medical requirements and two homes, I have quite a bit to manage. Ron can no longer help with any of this. For the time being, we are keeping our Gilead Lake home.
Love to all of you and special wishes to all of the Dads reading this! We will celebrate at Cale's on Sunday.
Love, Jan
About the eyedrops: 18 vials of blood were drawn after an eye exam at the Kellogg Eye Center. At Kellogg,they are spun in a centrifuge, packed in ice, and then we took them to a specialty pharmacy lab in Ann Arbor. Then we had 3 hours to kill until the eyedrops were made. They had me look through a window where the pharmacist was dressed in a hazmat-like suit and worked with arms extended into a sterile box. The tech talked to him with a walkie talkie. Now we have 14 little bottles of serum eyedrops that are frozen, and the bottle that we are using is kept in the frig and good for 3 days. Ron already thinks they have soothed his eyes.
About the Physical Therapist: Ron will have physical therapy twice a week at home. He is weak, and the PT thinks that he will need about a month to bounce back to where he was. He suggested buying another walker, so Ron has one on both levels of our house. Ron is quite fragile, and a fall would be bad, of course. That purchase was made during our down time waiting for the eyedrops.
About the Dr. Mag appointment: Ron is dehydrated, and the IV antibiotics I give him twice a day are hard on kidneys, so I am nagging him about drinking. I have reminded him that if he falls and breaks something that I will not be able to take care of him. Over all, he is very careful, but he needs to drink, drink, drink. The belly shots of Lovenox are in the last month--the 8th month. In July he will change to zarelto, a pill. I don't know which one of us is more relieved. His lungs are still junky in the lower lobes, and it is probable that he will periodically have a lung infection or pneumonia. He takes 3 antibiotics, an antiviral, an antifungal, and uses 3 different inhalers to keep his lungs working pretty well. He has not had to have oxygen at home yet. Ron rides in a wheelchair at all of his appointments. I just pile my stuff on his lap!
About us: we are doing okay. It is great seeing the grandchildren in the summer. We are very proud of their good citizenship, and academic and athletic accomplishments, and we enjoy a myriad of personalities. I wish that we could be a larger presence in their lives, but our situation with Ron's medical needs and how they are scattered limits us.
Our villa in BG has worked out very well for us. We love both of our homes, and feel very fortunate to be able to have both. With Ron's medical requirements and two homes, I have quite a bit to manage. Ron can no longer help with any of this. For the time being, we are keeping our Gilead Lake home.
Love to all of you and special wishes to all of the Dads reading this! We will celebrate at Cale's on Sunday.
Love, Jan
Tuesday, June 16, 2015
A Bump in the Road...
It was hard for me to write an update last week. Ron was in the hospital for 5 days but is recovering at home now. We had gone to U of M for a treatment on Monday morning, and his oxygen level was running low. He was stumbling as we went up to the clinic to check in. They sent him to the ER, and he had a hospital-like room there; regardless, 9 hours in the ER is a long time. He was on oxygen for 3 days as they treated him for a lung infection and two common cold viruses. He had an immunity infusion, so over 1,000 donors are helping him fight off these complications. He will need this infusion monthly for 6 months to boost his immune system. From a sputum culture and sensitivity tests, IV antibiotics were matched for treatment. He was able to come home since this is a "nurse duty" that I am able to do. (9 days at home) A physical therapist will evaluate him tomorrow. He did have a fall in the hospital which only bruised his knees slightly.
So this is a bit of a setback, and now we have appointments in AA 4 days of the next 9 days. Thank heaven for the villa in Bowling Green.
I will post some pictures tomorrow. Andy's family is home from Germany during this crazy time, but we have had a good visit. Abby 8 years and Lily almost 17 months have entertained and delighted us.
I need to sign off for tonight. Love to all,
Jan
So this is a bit of a setback, and now we have appointments in AA 4 days of the next 9 days. Thank heaven for the villa in Bowling Green.
I will post some pictures tomorrow. Andy's family is home from Germany during this crazy time, but we have had a good visit. Abby 8 years and Lily almost 17 months have entertained and delighted us.
I need to sign off for tonight. Love to all,
Jan
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