homecoming

Last Tuesday was the red letter day. I got home about noon. There was tons of stuff waiting for us. Todd met Christy, from the agency that supplies all the resperator equipment, at the house at 10:30. They had separated all the supplies into the things that are changed daily those that are changed every 3 days and those changed every week. Monday we had finally convinced Vibra Dave was able to drive me home and we promised we would have a caregiver ride with us. Tuesday Dave had to sign a few papers while our caregiver dressed me. Then I was free! It took time to organize every thing and figure out how to do all my care. But we did get ready for Christmas and it was wonderful.

Off To Recovery

Hello from Vibra: Cynthia was transferred to the Vibra recovery facility about 1:00 today, the 12th. She is doing fine, but is very tired tonight. I am sitting in her room now, and the time is about 7:30. She will be here until we get our caregivers trained on the use of the ventilator and how to manage her trech. I WILL be trained too, which probably worries her the most. We are communicating either by holding up a card with the alphabet on it and she points to letters with her toes, or we use her Dynavox computer if it is hooked up. We are still getting used to the new facility and have not settled in fully yet. Hopefully we can work out some the kinks tomorrow. Dr. Libby, her pulminologist calls her his hero and best patient. Considering that she had surgery, a collasped lung with a drain, a trech and now being on a ventilator, five days in the hospital is a fantastic recovery. Of course, all of you that know her would expect nothing less. We have told the company supplying caregivers for us that we want 24 hour coverage when she goes home. We will be interviewing possible new caregivers in the next few days. We will keep Cindy and Yuki, the current caregivers, as well. Once we know more about what other equipment we will need at home, and train everyone on the type of ventilator she will have permanently, we will have a better idea of when she can come home. Of course her goal is to be home by Christmas. Time will tell. I will followup with another update in a few days when we know more.

Update on Cynthia

Hello Everyone:  As usual, I cannot get a return on this keyboard, so this will just be a long paragraph.      Today is Saturday, about 5:30 pm.  Cynthia has been out of bed, sitting in her chair for most of the day.  The hospital staff removed the drain for her right lung and her catheter several days ago.  She needs assistance getting in and out of the bed.  Her legs are still strong, so she can help the staff by standing up to us the commode or move into her chair.  The ventilator settings are down to normal, everyday air, and her lungs seem to be working fine.  The respiratory therapist sucks fluid out of her lungs about twice a day which is normal.  All of us have fluid in our lung, but we are able to move it out by coughing or clearing our throat.  However, since her throat is closed off, the fluids have to be sucked out manually.  This is one of the things we will all have to learn to do to keep heathly and happy.    We are all hoping that she will be transferred to a rehabilitation facility on Monday to finish up the healing of her incisions.  While she is there, all of us will be trained on how to take care of the trach, her ventiltor and how to change out the various parts and pieces that need to be periodically changed.   She may be there for a week or more, depending upon how she is doing and how well we and her caregivers are learning.       The most dificult part of this entire experience is learning how to communicate with Cynthia.  She sometimes wiggles her feet to say yes or no, but we also us a card with the alphabet on it, and she points out the letters to spell a word with her toes.  In the mean time, we are trying to guess what she is trying to tell us.  Sometimes not successfullly, which is very frustrating for all.     Caregiver Yuki is here massaging her feet, so Cynthia is a happy camper for awhile.     Kari will be back about 7 pm to stay with her until she goes to sleep.  Kari is going home tomorrow afternoon, so the care will fall to our caregivers and me.  Once we get more informaton from Vibra, the rehav facility, we will know if she needs 24 hour per day caregiver coveraage, any kind of special bed, etc.  So we still have a long way to go.     I share all of the cards and emails you have been sending with her, and they do make a difference.    We both feel so blessed to have Todd and Kari with us and helping out.  I do not think I could have done it without them.     Guess that is all for now, I will try to update again in a few days.

Cynthia's New Adventure

Hello Everyone, this is Dave bringing you up to date with Cynthia's New Adventure. Many of you may already be aware of what is going on, but we wanted to reach out to as many people as we can to let them know about our latest happenings.
We started having problems on November 30th when Cynthia complained about pain in her abdomen and back. We went to the Emergency Room, but they could not identify any specific issue causing the pain and discomfort. Towards the end of our visit at the ER, she started feeling better and the pain subsided, so we were sent home.
Over the weekend, the pain returned and was more localized on her right abdomen side. We were able to get into our doctor on Monday, and he felt she might be having gallbladder problems. After some blood tests and a CAT scan, the doctors determined that her gallbladder was badly infected and had to be removed. We were sent immediately to the hospital across the street, and she was admitted for laproscopic surgery to remove the gallbladder.
Our Pulmonologist told us that a tube would have to be inserted into her throat and she would be on a ventilator during the surgery. He told us that there might be a problem weaning her off of the ventilator and back onto her BiPap breathing machine. She still wanted to go ahead with the surgery, so about 8:30 that evening she was rolled into the operating room. Luckily both Kari, Garrett and Todd were able to be with her before the surgery and spend to some time with her. At 10:30 we were told they had finally be able to insert the tube into her throat and were starting the surgery. She came out of the operating room around midnight and went directly to the ICU. The surgery went fine, but the doctors were concerned about the tube in her throat and her ability to go back to the BiPap. They had an extrenely difficult time geting the tube in.
 The next morning Dr. Libby, the Pulmologist, told us that the tube problems prevented them from weaning her off the ventilator, and the only alternative was to give her a traceotomy and put her on a permanent ventilator. When he asked her if she still wanted to go ahead, she emphatically indicated "yes" by shaking her foot up and down. The trach was done about 5 PM last night (December 6), and this morning she is doing fine using the hospital vent. During the original surgery her right lung had collasped, and a tube had to be inserted into the lung cavity to help the lung re-expand and drain the cavity. We hope to have the tube pulled tomorrow. She will be here in the hospital for several more days until the trach incision heals, as well as the other incisions, and her strength and health returns. From the hospital she will be transferred to a recovery hospital facility to get used to the new ventilator we will take home with us. And during that time myself and our caregivers will be trained on how to maintain her trach tube and the ventilator. We will probably have to get at least one more caregiver because she will need 24 hour coverage to ensure she is protected. With the ventilator and trach, she will not be able to speak or eat anything by mouth. This will be a big transition for all of us, but we will see it through somehow. So as of now at noon on December 7th, that is where we are. As more infomation becomes available I will try to update you. Please do not plan on sending her flowers because she will want me to take them home and take care of them. And they are not allowed in the ICU. Cards are great, and hopefully she will be back on the computer soon.

Fun Sunday

Last Sunday Todd's family joined us for special dinner. Yuki, one of my caregiver, is Japanese, and an great cook. She prepared dinner with Gyoza (Japanese pot stickers), Yakisoba noodle, and chicken teriyaki. Earlier in the week Yuki and I had gone to the store to pick all of the necessary ingredients. Sunday afternoon she made the filling of Gyoza including ground turkey, ground pork, cabbage, fresh ginger and other  seasonings. While this was chilling, she made a teriyaki marinade for the chicken, and prepared vegetables to go with noodles.

We had planned to have boys to help form Gyoza. Standing around the kitchen table (after we made them wash their hands), Yuki showed how much filling and how to shape wrappers. That ability for forming Gyoza seemed to come naturally to Walker. Sam had to work little harder, but really enjoyed making different shapes after Yuki said her children had always done that. Meanwhile Miles was not concerned about appearance, he set up a assembly line figuring speed was more important than appearance.

We made almost 50 and all were eaten that night. Walker wasn't going to quit until they were all gone. Dave was right there with him. They both agreed that you don't usually get to eat as much Gyoza as you want, but the night they  did.



 

Technology is Great

About 25 years ago, when a friend Mary had ALS she had to use an alphabet board and a pointer to spell out words so she could communicate.  Things have really changed.  At our ALS support group yesterday there were three different communication devices that were being used for those who cannot speak.  Additionally, there was a whole batch of us with power wheelchairs that scoot all over the place on our own.  Many of us use bi-pap for breathing assistance.  I use it the most - 24/7.  But many of the others use them at night.  Several of us also have the computers mounted on our chairs while others choose to use an iPad.  The technology today makes it so much easier than when I first found out about ALS with Mary.

Always Something New

This past week has been very busy with different kinds of activities.  I'll start with one and may or may not get to the others. 

Once again technology is my friend.  My left arm is now having difficulty driving my wheelchair.  We got attendant controls on the back but I like to do my own thing.  So Monday we had an appointment with the physical therapist who is a "seating specialist" - bet you didn't even know there was such a thing!  Accompanying me was my entourage, Dave and both caregivers, Cindy and Yuki.  It was Cindy's day off but she had noticed some problems and asked to join us.  The PT poked and prodded and checked my back and neck and made adjustments.  Then the good part came...

The wheelchair representative brought a chair with foot controls for me to try.  It was great fun!  Before we could try it we had to take my bi-pap machine off the back of my chair and figure out some way for it to follow me in the other chair.  The best solution was to rest it on a tall rolling office chair and have Dave follow along behind me.  After a short bit of driving, the PT set up two chairs and asked me to do a figure-eight around them.  I had no problem, unfortunately, Dave and the office chair didn't fare as well.  After that they let me try a higher speed and then he really had some challenges.  I was driving using my left foot and had to go forward, back, and sideways.  This came easy for me thanks to my Bernina sewing machine.  Because the machine has a knee lever for the right knee, they recommend using your left foot for the foot pedal so I was ready to go "south paw" style.

There was one additional complication.  The technology is great but because I'm turning 65 in November I am now on Medicare.  So it will be a whole different process and hopefully it goes smoothly because I want my new toy.