Jan 16, 2018 Latest post:
Mar 29, 2018
Welcome to our CaringBridge website. We are using it to keep family and friends updated in one place. We appreciate your support and words of hope and encouragement. Thank you for visiting. The following comes from emails I have been sending to our Prayer Partners--edited version, to catch up anyone who's just joining the journey. 9/10/17: As of today, Richard is in ICU, lightly sedated, and with a breathing tube, but that's good because he's stable and has someone watching him closely at all times. He has had some symptoms over the last few months that seemed like minor, easily treated problems. But then for some reason his diaphragm stopped working, which meant that it has been extremely difficult for him to expel CO2, and too much CO2 in your system has really bad effects. Everything that has happened over the last 2 weeks for him centers around whatever caused his diaphragm to stop working. With all that's gone on--the crises, the tests, etc. over the last two weeks, I have been treated to an experience of a man who is extraordinarily strong and resilient and willing to do anything to fight for his life and health, and for that I am extremely grateful. And thanks for all your prayers!!!
9/17/17: We know that Richard did not have a stroke, heart attack, or bleeding in the brain. It's not caused by cancer, nor by the arthritis in his neck (no bone spurs pressing on nerves), nor enlarged thyroid nodules. For the time being, he is still in ICU so not able to receive visitors. We hope that will be changing soon. And for those who can pass on to other family, Parish prayer lines, and ME prayer lines, it is OK to let the other "pray-ers" know as well.
9/29/17: Richard is doing really well. It's great! He is now fully out of sedation and it is so great to have him back to his old self. He's also able to write notes or to communicate by using a letter chart or by mouthing words, though he has to really enunciate for us to read his lips. It's been great, because since he's fully conscious, he's really participating in his rehabilitation and in "conversations”.
10/5/17: Richard has been doing really well the past few days. Physical Rehab has had him up in the wheelchair for a couple of hours a day, and they are pleased that he can do that. Occupational Therapy and Speech Therapy are also working with him. Today Richard got a pacemaker implanted. He has Atrial Fibrillation, among his many ailments, and his heart has gone crazy sometimes with the rehab, which makes them leery of doing too much. It's minimally invasive surgery, but he will have to take a few days without Rehab while the surgery heals.
11/5/17: Richard is still using a ventilator, but the doctors have assured us that the goal is still to have him off of it at least some of the time. A big thing he's fighting right now is an infection. It seemed like he was having lots of minor infections over and over, but now we realize it may be the same infection coming back again. This time instead of short-term antibiotics they are using a more heavy-duty antibiotic which should be able to knock it out. One thing I've noticed is how resilient he is, and since he gains strength from interactions with friends, it could make his ability to fight even stronger.
11/10/17: Reading the above notes, I see there are some updates I haven’t covered. It takes a long time to get better when your goal is to strengthen muscles and other organs, but the Rehab doctors and therapists are working on it. And our son Ed has been especially helpful, staying with his Dad in the daytime so I can work to bring in income and also to keep the insurance coming. Then I go sit with him in the afternoon and evenings. Ed is talking to the doctors and learning about all the details of his illness and care, and also being a great support for me.
11/19/17: Richard has made some great progress! He does still get tired and out of sorts sometimes, and when he has a bad day, we end up feeling tired, too. But he's also been pushing himself to get stronger and talks a lot about getting out. He has been transferred back to Rehab (RTC2) so that the concentration will be on getting out. Marilyn, Ian, and the grandkids are here for just a few days (basically a long weekend) to visit with him, since we won't be able to go to Arizona for Christmas. (Even if Richard makes it home by then, he would not be ready for travel). Everyone, including grandkids, were allowed in; the kids just had to be registered at the desk before they came in, since the basic rule is no one under 14. His face lit up like about a thousand watts, seeing Marilyn and the kids. He was in Hog Heaven. The progress is great, but as the saying goes, a chain is only as strong as the weakest link. For Richard, that link is his lungs, and there's no telling how long it will take to satisfactorily build them up. So yes we do still need the prayers. Also there's a bulletin board in his room and I have managed to squeeze all his cards onto it so he can see them all. It's pretty amazing.
11/17/2017: Thanks so much to everyone who's been praying for us. This journey has been very long and it gets tiring--and is most wearing of all for Richard. Ed and I can spell each other and make sure we get a break sometimes, but Richard doesn't get to have a break. I can see the toll it takes on him. We so much want him to be well enough to come home, but no one can wish him home as much as he wants it. It's still a long road ahead. There are also decisions to make about his treatment going forward, also.
12/4/17: First the successes: Richard has been gaining so much strength in the areas where he is strong to begin with. His small muscle dexterity is better than most people have at any age; his eye-hand coordination and large muscle strength and dexterity is also great, especially at his age (72). (He even does sit-ups in bed to exercise his arms and shoulders). He is a perfect driver in his motorized chair, able to go in any direction, even make U-turns inside the elevator and 3-point turns to park in a crowded hospital room. Ed is certified to take him outside the department (but not outside the hospital), so on Saturday they went for a "walk" all over the hospital--up to the 4th floor, where he visited with the nurses that he's had up there and to the front windows where he could watch a Grand Opening event down by the new wing. For us, it seems that Richard is making great strides in his healing. However, getting off the ventilator will be a process for him since he has some more complicated issues. Valley Medical's program is one that only works for straightforward cases that can be done quickly; there are only two programs in the entire Bay Area that can do the progressive vent weaning. The two programs are Kentfield, on the 6th floor of St. Mary’s Hospital in San Francisco, but not affiliated with the hospital. The other is Kindred, in San Leandro. We toured both and chose Kindred, based on distance since both programs were rated equally. But we were all ready for transport when the insurance company decided they could not agree to contract terms with Kindred, and we were left with only Kentfield as a choice.
12/26/17: In just a week at Kentfield, Richard had gone from being in great shape to having pneumonia and other complications that the staff was slow to catch or treat. That led to a quick transfer to St. Mary's ICU (same building, different entity). The doctors and staff at St. Mary's were wonderful, with quick and appropriate treatments, so that Richard snapped out of his slide quickly. We were really happy to see how quickly he recovered, but not so happy--actually, with fearfulness and trepidation--about going back to Kentfield. Kentfield does have some fabulous staff members, but some lackadaisical ones as well. We are working with them so they get things right. This is our biggest prayer right now--that Kentfield's staff will get it right this time around.
I was able to decorate Richard's room with a small tree (about 15" of tree in a pot about 9" tall, total 24") with small lights and red and gold Mardi Gras beads to bring color; and I put up garland and Christmas cards. He also got a lovely floral arrangement from some longtime friends--evergreens with white mums and red carnations in a Christmas tree shape--that brightened the room. I brought in a CD player with Christmas music. (It's not just making the room cheerful and bright; it keeps him oriented in time, since 4 blank walls can leave you kind of suspended as to time or place). Ed was up there all week and had to handle the transfer back to Kentfield and then I spent the weekend up there to enjoy Richard's company but also to make sure Ed got a break. (Being responsible for another person, especially when you sometimes have to ride herd on the paid caregivers, isn't easy). Then Ed, Teresa, and Diana were all there Christmas Day. All of us, including Richard, opened presents in his room. (Though all except Richard did go out for dinner at a place just off Union Square called the Daily Grill, since on weekends the hospital has only vending machine food).
January: Ed, Diana, and I spent New Year’s Day up at Kentfield with Richard. I have redecorated the room—first with Happy New Year’s decorations, and now with pictures and other cute things the grandkids sent. It looks really cool. We added a whiteboard at the foot of his bed and make a note of what day it is, so that he can stay oriented in time.