Bumps in the road

This is Ed's son Bob writing again.

It's been another busy week. Where to start? We have been caring for Dad at home. His sister Judy has returned to Michigan and we now have daughter Carla and daughter-in-law Cindy here to help out. I'm still here, too. Our focus this week is to continue to care for Dad day by day while work to comply with his wishes that we get him into a skilled care facility that will care for his health needs during and after the cancer treatment. While we had hoped Dad would improve enough to be able to handle the diabetes medication and testing himself, it is now clear that he requires help to safely manage the diabetes.

He is still quite tired and spends a lot of time resting. He's still getting his chemo and radiation treatments. He's been eating very well and hasn't had any pain or nausea. We've had some adjustments on the diabetes medication that have helped avoid dangerously low blood sugar in the morning. The doctors have reduced the dosage of a steroid he takes to reduce swelling in the brain. The doctors think the steroid is responsible for much of the difficulty with controlling blood sugar and is probably behind other side effects, like swollen feet. Dad is having good days and bad days. If the blood sugar in the morning is low, he has trouble getting on his feet and moving around. On the good days, he gets around well. He uses a walker to get around the house safely.

Dad is prone to moments of confusion. Monday night, we were finishing up with dinner with Dad out at the dining room table. We'd been having a good time with lots of conversation and he was very clear headed. We were confused a bit when he got out of his chair and sat on his nearby walker and then asked where his couch was. A couple questions later, we figured out he thought he was in his computer room where he spends a lot of time in his comfy recliner ("my couch").

We got him to the recliner to and decided to check his blood sugar again. Normally we check before each meal and again before bedtime. We weren't sure what the level should be right after a meal. While would have been pretty high for a before-the-meal reading (requiring a larger dose of insulin), it wasn't sky high, either. We called his primary doctor for advice. After relaying the story about confusion, they said the sugar levels weren't high enough to cause confusion so they said we should take to the urgent care clinic to have him checked out. We did that.

Thanks to the modern miracle of medical records, we got to give a medical history and complete list of medications to them. (Dad's got 5 different kinds of pill and two types of insulin.) After all that, they checked his blood sugar again (it was dropping by about 15%) and said due to complexity of his case, we needed to take him across the street to the full blown ER to have him checked to be sure there wasn't something going on. We rounded up our stuff and headed out to the St Francis ER. We got to give another medical history and story telling about what brought us to the ER that night. They checked his blood sugar again (still coming down). By the time it was all said and done, they found no significant change in Dad's condition and we could go home. They'd checked his blood (in two different locations), did an EKG, got a urine sample, and did a CT scan. It only took about 6 or 7 hours total. We left the ER about 1 am. Dad was pooped. So were Carla and I. Yesterday we had to skip defer the radiation treatment because Dad was just exhausted. Like snow days at school, they will add the missed day on to the end of his treatment schedule.

I'm not sure exactly what lessons we learned from this ER experience. I suppose one is that erring on the side of caution can also take its toll. Another is that visiting the urgent care instead of the ER is a waste of time and energy when you've got a complex case history.

The very last day of radiation should be next Wednesday. After that, he is done with radiation and gets a 4 week break from chemo to recover. After the break, the plan is to do 6 cycles of chemo-only for a week and then 3 weeks off.

We have had some home health care services recently to help Dad shower and provide some physical therapy. We have been keeping in touch with his doctors as we monitor his health. We are also busy filling out paper work to apply to good care facilities that can meet Dad's needs. The good ones all have waiting lists, so we will be getting his name on the lists ASAP. It would be hard enough filling out forms like these for myself. It's even harder to do it for a loved one. Thankfully, Dad is pretty organized.

On happier notes, Mom is doing very well. She is maintaining her activities with many friends helping her with transportation. With Cindy here, we also get Emily, her daughter, whose birthday is later this month. Dad and Emily were very glad to see each other again.

I think it will be another busy week.

-- Bob