Saturday May 30

Hard to get much information on the weekends when my usual contacts are off enjoying the rest of their lives apart from work. Agnes appears to be resting comfortably, eating a little bit, getting weaned from the respirator with no apparent medical issues. Another day for baby steps on the way to coming home. Thank you Pastor Mitch for bringing her communion. That will be a great comfort to her.

Thursday May 28

Agnes is settling in to the new hospital. Moving via ambulance with a different respirator tired her out and then things are different in one place vs. the other. However, she is alert, getting a little physical therapy, doing a little breathing on her own, and she got to eat some ice chips the other day. I think now that she is settled she should start making progress every day toward getting back home. I'm making a lot of phone calls every day to keep tabs on her progress.

Wednesday, June 27

Agnes is at Kindred Hospital now. I talked to everyone yesterday and sent a "hello" to her. She was looking at her cards and taking a little bit of ice yesterday. She has finally learned to communicate, so I am sure that will make her feel better. Today she will be evaluated and a treatment plan put in place. Thanks for all the cards, prayers and good wishes. I think it is all starting to pay off. Here are her cats, Fifi and Kelly, waiting for her to come home.

at the ole' ball game

The most amazing phone call this afternoon came from Carol. While I was there we had only problematic communication. The one day she wanted to tell me something was a disaster, and I finally had to leave since we were driving each other crazy. She was too weak and too sedated to really be aware. When Carol visited today, she was ready to use the letter board to tell them where she hurt, and that she wanted to watch TV, and kept badgering the nurse until the nurse said there was a ball game on. Big smile, nod, nod. Sounds like Agnes has learned to communicate with what she has got to work with. You rock, Mom.

Tomorrow she will likely be moved to Kindred, 4930 Lindell Boulevard in St. Louis, 63108. They will use a special ambulance used to transport patients on ventilators. This is special place that we have checked out, and then I visited. She will have hours of physical and occupational therapy every day. Agnes knows well where this is since her mother, Hazel, was switchboard operator at the Chase Park Plaza Hotel across the street. Carol has promised to read cards to her tomorrow.

Sunday May 25

Got my update by phone this morning as I have had to return home here in San Jose. Yesterday was a day for recuperation, Agnes was pretty tired from all the work of breathing on Saturday. She has also started physical therapy, which is going to be a long road after being virtually motionless for almost 2 weeks. She spent a bit of the day back on the ventilator to let her rest. There was a final minor surgical procedure to stabilize her, and she is doing fine now. Tomorrow she will be moved from Anderson to another place to allow her to be weaned off the ventilator and restored to health. Stay tuned for more tomorrow. Meanwhile, thank you, staff at Anderson, for keeping my mother with us. Good luck with the new ICU, shown under construction here, and may you keep up with the work of saving lives.

Update by proxy...

Agnes is still in the ICU and breathing on her own during the day. She is on the ventilator at night to allow her to rest. Agnes is beginning physical therapy.

My computer has crashed, so this is my last post until later this week.

Sat May 23

Agnes is making some progress. She was only on the ventilator for the night with light sedation. Last night and again today she is breathing on her own. Staples were removed from incision, replaced by SteriStrips. She is more than ready to go home, but it will be awhile. She is very frustrated by her inability to communicate, and restless. I'm sure she is uncomfortable, both from laying in bed for so long and from having to work so hard to breathe. The IV feed will go away today and she is tolerating the tube feed much better.

Unfortunately this will be my last "live" post from her bedside. After 12 days of sitting here, I need to get back to work. Yesterday I went to check out the other hospital in case they need to move her there; today I will visit the nursing home where we can send her when she is ready for some physical therapy to get her strong again. Pastor Mitchel has been my rock, visiting the both of us daily and helping me sort through difficult decisions when she was so critically ill, and he will be checking up on her. Then there is our dear family friend Carol, my lifeline to Illinois, who will be cat-sitting, mail-forwarding, bed-checking and reporting in. Regretfully, in the morning, I will have to leave her in good hands. I'll be back when she needs me - for now I have to leave her in the good care she has been getting.

Good morning! Fri 22 May

Agnes has come around from the sedation and is alert and responding with nods and shakes to questions. She can't talk, of course, but her breathing is steady. All her vital signs are good, she is off antibiotics, she is moving and wiggling and not in pain. The skin on all the pressure points is looking good. Agnes understands she cannot mess with the wires and tubes, so she is free to try to move and exercise after laying motionless for the past 10 days. She understands she has to get strong and work through some physical therapy and then she can go home. It's good to have her mostly checked out of la-la land.

Next step is to make arrangements to move her out of ICU to a facility in St. Louis where she can be cared for and weaned off the respirator. Fortunately I have a cousin with excellent connections to medical administrators, and I have good reports on the facility where Anderson Hospital proposes to have her moved. Time for a field trip this afternoon to check it out and introduce myself.

Thursday, May 21

Agnes is much the same, maybe breathing a bit better today. Still sedated. I am very hopeful the procedure later today will allow her to be less sedated and she can begin to participate in her recovery - hard to breathe deep if one is too sedated to respond, isn't it? Stay tuned for good news later today.

Wednesday 20th

Still in a holding pattern. No change. I promise to make a round of phone calls when there is news. I don't expect anything to change before tomorrow. She is stable, her lab work and vital signs are good, her skin is holding up, and she is heavily sedated and as comfortable as we can keep her. Stay tuned and think positive.

supportive medical care

Agnes' medical team and I made some decisions today that we hope will enhance her chances for a full recovery. Agnes had a medical crisis that resulted in very major surgery to clean up after the infected gall bladder, and now she is very weak. It will be some time before her muscles are strong enough to breathe on her own, so we have made the decision to connect the ventilator directly to her trachea to make it easier to breathe and to allow her to remain on the ventilator until she is strong enough to comfortably breathe for herself. This will be a much more comfortable arrangement for her than to have the apparatus in her mouth and throat. She is not doing well on the tube feeding. She is also having a line inserted into her artery so that she can continue on total parental nutrition. You don't want too much information here, but that should also make her more comfortable. We hope these changes will make it possible for us to reduce the amount of sedation. She is otherwise stable, and when we see how she is doing with these changes, we can move Agnes to a setting that will allow rehabilitation while she is weaned off the ventilator. It will be a long recovery, but barring unforeseen circumstances, we still expect that to happen. Please folks, she needs all the prayers and good thoughts to keep comin' her way.

no good news yet

Discouraging, Agnes is not breathing any better yet. I had truly hoped she would be doing better by now. She is agitated and moving when she is not under the pain medication. I hope there is better news when I go back to the hospital this evening.

A smile is a beautiful thing

It’s Sunday. I know this because it is the day there is a big newspaper. There is a daily calendar on the wall across from the bed. I had assumed it was for the patient but now I understand it is for me. Agnes was too weak to breathe, so she is back on the ventilator again since last night. She seemed OK and sleeping comfortably when I left for the day, then the phone rang and the ventilator was required again. It will be some days before this changes. I am not sure why I sit here all day, as most of the time she doesn’t know me, but there you go. I don’t know why I didn’t think to pack my little radio – I could use some company. Just before lunch she started thrashing around, meaning the morphine was wearing off and it was time for more. If you ask her if she is in pain, she slowly nods. That’s all. I told her I was going for the nurse, and while we waited for him to come, I pat and rub on some place that is not stuck, bruised or be-tubed, and tell her to hold on for a few minutes. Today, she opened her eyes and nodded. I told her what had been happening, that she was going to make a complete recovery, explained about the respirator and she nodded. It was the first time I had explained anything that I think she comprehended. Especially, I hope, the part about complete recovery. So while the morphine was kicking in, I told her who had visited, who had sent prayers. I told her I had her meal ticket and was going out to get lunch and would be back when she woke up. I told her I was going to eat her lunch because she was not going to get it. And around the breathing tube, past the tape over her mouth, she smiled. Beautiful.

Let there be light!

Saturday morning. Baby steps today. But we did get the ventilator tube out. After the machine left, I moved my chair from the dark corner to the window. Now I have enough light to read. That has made a surprising difference. Yay! Agnes is now on oxygen, but breathing through her mouth. She becomes very agitated, but appears to be in pain, so she is still in la-la land but only on morphine now. I’m pretty handy at reading all the monitors and know when to get the nurse and what to tell him to do. The sedative they were using has the side effect of amnesia, so she should not remember any of the past days, which can only be a good thing. Her surgeon is a wonderful doctor, at least as far as bedside manner. He is very good at explaining the past, expressing optimism, letting me know what to expect, and outlining steps if developments are not as expected. Bless him, he has promised me daily phone updates when I have to leave on the big silver bird again. Her nurses have been wonderful, also. I have always been dubious that they used this hospital in preference to going to St. Louis, but I like her doctors, and her care appears appropriate. You can’t judge the hospital by the cafeteria, I’m just sayin’. So finally, the proper combination of mild sedative, lidocaine patches, morphine and diuretics seem to be operative, and she is sleeping without distress. Let's hope tomorrow brings more progress.

happy banding day, 3 girls and a boy

That's good, it has become an annual treat, the banding of the falcon eyasses on the city hall tower through the lens of the blurry web-cam. Glad I didn't miss it. It is so green here it makes the eyes hurt. You who live where it does not rain much understand this. A cardinal, an oriole, peonies make my heart sing. People are getting ready for summer here, painting lawn furniture and fat men are riding mowers on the impossibly green lawns. 48 hours post surgery, Agnes is still on the ventilator. I was crushed when they told me it would be another day. When the sedation starts to wear off she gets very agitated, and since I am not sedated, I am having a hard time dealing with that. After we got her quiet again, I left for some time, as she does not know if I am there or not. They tell me she is doing well, but not that well. I suspect there will be no more news for awhile. Sigh, more waiting.

waiting

beep boop. All day. I got in very early so I would be able to talk to all the docs. She went from sick to way sicker than I ever hoped she would be in just hours. Maybe just as well I was not there Tuesday. It must have been a happenin' place and I only knew the half of it before today. It's pretty unusual for her to still need to be on the ventilator- certainly that surprised me. And it is bonus day; we made it up to 7 bags of stuff hanging on the tree. Agnes began to come out of the sedation and began fretting about the ventilator tube and the restraints that kept her from pulling it out. Her oxygen was decreased so she would have to work harder to breathe, so they can take the tube out. She did know it was me, and her eyes opened wide when I told her sister Nora Jean had sent love and prayers - that clearly touched her. But she was fidgeting and squirming so much she started to have a lot of pain, so she is back in la-la land for the night. Maybe tomorrow. It's a pretty small community of 6 rooms, so I have been watching family come and go and hear them hollering at their loved one to get a response. There is a young woman there on drug overdose who is totally unresponsive, and a few old people. I've never been around people this sick before, and literally everything stops for everyone (except the staff) until the situation is resolved. That's me, on hold, waiting.

We are temporarily suspending normal programming

We will take a break from our usual publication of random musings to keep tabs on my mother’s recovery. Agnes had an acute gall bladder attack Monday morning and a number of other complication ensued, so that she went from being uncomfortable to acutely ill within 36 hours. The medical staff intervened to prevent cardiac failure and stabilized her sufficiently for surgery Wednesday. Unfortunately she had to have the old-fashioned surgery, not the newfangled laparoscopy kind that would have gotten her out of here in a day or two. The good news is that the liver and pancreatic tests are back to nearly normal, so she is recovering. So for the next few days I will sit in this cold room with a warm laptop for company, listening to the bong bong bong beep-beep-beep whoosh whoosh hisssssssssss noises that surround me. Mom has been fighting the restraints, so she is pretty well sedated still. She recognized me last night, but today there are no lights on. The plan is to start to wean her off the respirator and try to get her out of bed in a few days. I’m guessing a skilled nursing home with some physical therapy will be required to get her back on her feet. Meanwhile the technology in this place is pretty amazing. She has more tubes than I knew there were places, although amazingly enough, there are no drains in the incision. In addition to the machine that breathes for her, there are 4 bags of stuff dripping in to her neck, where there is a handy-dandy port for syringe injections, and blue leg warmers that squeeze her calves rhythmically to assist the circulation in the lower half of her body. I would never embarrass her by photographing her looking so terrible, but you have to be impressed by how much stuff they have hanging off the walls. . However the technology that is totally unimpressive is the free WiFi. You get what you pay for, and occasionally my computer can find Yahoo, but no way can I get through the firewall. So I’m working off line and hooking up to the lan line in the computer room where mother lives.

Blogpage for Agnes

When I began to post on Agnes's welfare, I thought it would be serious but transitory. Unfortunately it is now serious and it's going to take awhile. So we will move Agnes's updates to this site. Thanks to friends and family who want to know how she is doing