Scary days, better days

Sorry it has been so long since I updated the blog. Last week was a bit scary and then a bit hectic. Ed's physical strength deteriorated during the week. He can no longer get up from the bed or a chair or the toilet on his own. What was the truly scary part occurred on Wednesday.

Monday & Tuesday Ed seemed dazed and in a fog, often unable to answer simple questions. The home health therapist could not get him to talk with her about using his walker. Wednesday morning I called the doctor with a chronicle of what I saw as effects of the pain patch. When he called back (3 hours later), he said to take the patch off immediately. Unfortunately, the oncology office was in the midst of moving to their new building and the doc could not see Ed in his office (no such thing as house calls anymore). Wednesday night when Ed wanted to go to bed, he asked for help getting out of the chair but what he said was "I reach buffet" and then some garbled, meaningless syllables. During the night he was up twice, each time babbling and looking like he didn't know I was there. At 7 a.m. Thursday morning I had the oncologist paged and he did call right back. He was sure I was seeing residual effects from the Fentanyl pain patch. He told me to call the emergency squad and get Ed to Grant Hospital (downtown Columbus & the doc's base of operation) for evaluation to be sure it wasn't something else. As he said this, Ed called to me from bed, asking who I was talking to. He was lucid, clear-eyed, focused, answered questions clearly and quickly. As a result of hearing this over the phone, the doc said to just watch him and if any confusion or dazed look returned to then call 9-1-1.

During the day Thursday, Ed twice had delusions, thinking he saw "Marie's coffee cup" perched on his walker (my sister, Marie, had called while we were having lunch so she must have been on his mind) and wondering what was next to his shoe (he figured out it was just the carpet which he first called "blanket"). He also sat and counted and re-counted the adjustment holes in the legs of his walker; he said he was making sure there was the same number on each side. After each of these incidents, he looked up at me and said, "I just said something silly, didn't I." Since he realized that, I didn't call 9-1-1.

Friday morning, he was much better and continued to remain lucid throughout the weekend, conversing a little with our various visitors, following the conversations going on around him when all the kids and grands were here on Saturday, and paying attention to sports on TV as he watched with Melissa and Mark. He and I had a good discussion about his health situation Thursday morning, clarifying his wishes to have a ventilator if necessary and re-affirming everything else in his Living Will. We had another good discussion on Sunday about resuming Nexavar today, reviewing all we now know about how it will affect him and what we will do to try to minimize the side effects now that we're smarter about it. Last night he started on Oxycodone (generic for Oxycontin) because the doc still feels he needs to be on a narcotic for pain. I went to a group session Thursday evening (daughter Debbie and Tom "Grandpa sat") that made me realize I need to be much more aggressive about calling the doc. The 2 presenters happened to be from his office, a nurse and social worker, and they insist that they want calls, so I will be reporting every little thing instead of trying to second-guess what's going on.

I think Ed enjoyed having everyone over on Saturday tho it was really tiring for him, especially since he has gone for several days now with no afternoon naps (no pain patch putting him to sleep a lot). I am especially glad Melissa and Mark were here, not just for the extra help but for my own peace of mind to see that she is doing OK with her pregnancy. They brought ultrasound pictures from her latest doctor visit--amazing to see this baby in 3-D, even one photo where he was yawning. I say "he" because I think it's a boy and I already think the face looks like Mark, but none of the photos show anything gender-wise. The technician and OB know the sex, but since M&M don't want to know, we don't get to know.

Meanwhile, I found out Friday morning (Debbie "sat" again) that I have some eye problems that will require laser surgery, designed to correct "narrow angles" and prevent glaucoma--just what I needed, one more thing. And once again a doctor told me I'm "older" now plus my genes are responsible for this condition. The laser surgery is supposed to be simple and only take an hour total, I can drive myself to and from the eye surgery center, but each eye will be done a week apart on June 28 and July 5. Follow-up will be drops for a few days with no impairment of my eyesight so that I can drive, etc.

Guess that's enough for now. I'll try to update the blog on Wednesday after Ed's oncology appointment.

Everybody please take care of yourselves.

Joni