We are up to Wednesday, December 21. I had some hip pain overnight but took a pain pill and it seemed to help. Spent most of the morning resting after a restless night. I had a little bit of problem with my blood pressure being a little bit low and my heart rate a bit low. The low heart rate sets off an alarm that kept waking me up. I think it was something in the alarm that got reset when we took the heart rate monitor off of me when I would get up in the wheelchair. This continued to be a problem throughout the stay.

One of the ridiculous hoops that we had to jump through in order to get approved for a ventilator at home was that the equipment company had to inspect our house electrical system to make sure it was safe to use the ventilator. As explained in this Facebook post, I had already researched online the type of ventilator we were going to use and I knew it was no more powerful than the CPAP that I was already using. In addition the ventilator had two backup batteries so if the ventilator would fail, the battery backup would be way more than enough to get me through the night. Keep in mind that this ventilator really wasn’t a life critical issue for me. It was just to help me sleep better like a CPAP. But you can’t use a CPAP when you have a trach.

Dad did finally make connections with Home Health Depot and they came to the house at about 1:30 PM. So dad came to the hospital after that. I spent the day working on my blog and swapping some emails with my friend Judy talking to her about the events that I was blogging about. I made no plans to get out of bed since dad was going to be coming late. [12/21/2016 10:48 AM] [12/21/2016 12:46 PM ]

In an earlier blog post about my stay in the ICU I mentioned that my friends from Adafruit Industries had called the hospital to inquire about my progress. Adafruit manufactures and sells open source electronics and gadgets to makers like me. The post titled “Meeting Your Maker” is mostly about wrestling with my own mortality. But it’s also a bit of a play on words because it talks about my involvement in the maker community and my curiosity as to whether I had made an impact on that community. At the end of the post I talked about the history of Adafruit and my history with them. I was really touched by how concerned their founders Limor Fried and Phil Torrone had been about my illness.

I use Adafruit parts to build my ultimate remote that I used to control my iPhone. I needed that gadget to communicate when I was on the ventilator and typing messages on my iPhone was my only means of communication. I had exchanged emails with Phil and Limor in the days since that phone call but I wanted the opportunity to speak directly to them. Wednesday nights were their regular night for the weekly “Show-and-Tell” video chat where people like me would login using their WebCam and show off their electronic projects, 3D printed gadgets, cosplay props and costumes or any other kind of maker project whether it involved the use of Adafruit products or not. Because I have a WebCam in my laptop and had pretty good use of the laptop from my bed, I decided I would drop by the Wednesday night program just to thank everybody for all of their well wishes and support.

I dropped Phil an email to tell him I was going to be at the “Show-and-Tell”. He sent me an email with a link to a video he had made. Each week they have a staff meeting at Adafruit that they call “State of the Fruit” in which they discuss how the company is doing, talk about goals, and they read support emails from satisfied customers. It’s sort of a weekly company pep rally. Phil told them about my illness and they made a brief 10 second private YouTube video in which they all said in unison “Get well soon Chris”. I couldn’t believe that they had done such a thing. I was very moved. Here is the brief video.

Even though I already linked my “Show-And-Tell” video in the previous blog post, I will copy it here again. My segment starts at about the four minute mark.

After the weekly show and tell, there is another program called Ask an Engineer and among the features of that program is a recap of what happened in the just concluded show and tell program. Although I did not watch the following Ask an Engineer live that night, I did go back a few days later to see what they had to say about my visit. During that segment there was a sentence from Phil that said something like “as we told you about last week…”. That was the first that I realized they had talked about me at the previous week’s Ask an Engineer. So here are some links to those videos. I’m still blown away by the support I got from them.

This is the Ask an Engineer from 12/14/2016 which was the first show after my email to Phil and his phone call to me. It is queued up to the 14:21 mark of the one hour program at the point where they start talking about me.

The segment is about two minutes long. At one point Lady Ada says “It’s never too late to tell the people you love how much you care about them.” And that was the entire point.

After I appeared on the show and tell from my hospital bed on 12/21/2016 this was what they had to say in the recap during the Ask an Engineer. He talks about me at this 15:30 mark.

Phil mentioned that they sent me a get well video. That was the 10 second video that I showed earlier.

Shortly after all of this occurred, I met up with a group called ATMakers.org that is dedicated to using maker skills to create open source assistive technology solutions like my ultimate remote. Adafruit has taken up that cause as one of their pet projects and have been very supportive of ATmakers.org and all of our efforts to build useful gadgets. Not everybody has the maker skills or equipment that my dad and I have to build gadgets for me. This group tries to connect high school and college engineering and science students with disabled people to work together and create custom solutions. It’s been a real honor to be a part of that effort and in some ways it grew out of my experiences during this illness.

We did pass our electrical inspection from Home Health Depot. Dad tried to pick their brains about how long the process was going to take and was there anything we can do to expedite it. With Christmas right around the corner I was worried it was going to slow things down even more. It turns out the guy doing the inspection really didn’t know anything. He was just there to do a job. As it turned out the Christmas holiday did continue to slow things down. I posted the following message to Facebook right before I went on Show and Tell and then after the show I posted that video to Facebook as well. [12/21/2016 7:07 PM ]

Thursday, December 22 I had a visit from Joyce Beavan my caseworker from CICOA. That stands for Central Indiana Council On Aging. They provide case management services that manage all of my Medicaid and coordinate my home health aide. She was able to meet with the case management person from Seton Hospital named Michelle. She made all sorts of promises about different kinds of nursing assistance she was going to be able to get for me once I went home.

One of the problems is that an ordinary CNA (Certified Nursing Assistant) like I had had for many years, was not allowed to do anything with my trach. That didn’t surprise me because when I had gotten my G-tube they similarly were not allowed to have anything to do with it. But what I didn’t know was that the CNA was not allowed to be alone with me now that I had the trach. If I needed a suction of my trach they weren’t allowed to do it and so I would be in big trouble if they were the only person available. This was going to be a real problem because typically dad would do his grocery shopping on Tuesday mornings while the aide was getting me dressed. Furthermore if he had doctor’s appointments he would also try to schedule them in the morning when the aide was here. As an alternative we would sometimes schedule the aide for extra hours if he had an afternoon appointment. Only a real nurse would now be permitted to do that. They assured me that there were lots of nursing services that were going to be available for me.

I was concerned that they were going to completely replace my CNA with a real nurse. We had had a lot of trouble finding someone to fill that spot and I didn’t want to have to start over again with somebody new. Also I really didn’t need an RN to get me bathed and dressed. We just needed someone to stay with me while dad was gone. I got reassurances that I can keep my CNA for morning bathing and dressing as long as my dad stayed home. The nursing would be in addition to that. Spoiler alert… Despite all of the promises and despite their best efforts, it still took us nearly 6 months to find a nurse.

The other little interesting incident that happened that morning was that one of the respiratory therapists tripped over my nurse call button wire and broke off my 3D printed adapter ring. My notes say that I sent a message to dad to bring superglue and/or anything else we might need to repair it. I don’t recall if I typed a message on the computer to alert him or if I gave him a phone call. But the bottom line is he brought the necessary equipment and we were able to repair the button. Here was my early morning Facebook post. [12/22/2016 9:38 AM ]

After taking Wednesday off and staying in bed, today I got up and was out of bed for about five hours. Carol came by and brought my great-nephew Leighton (her grandson). We went down to the cafeteria while dad ate lunch. Carol helped me shoot a live Facebook video where we took a tour of the cafeteria, the nativity scene in the lobby, and the chapel. Unfortunately when I wasn’t facing the iPhone you could not hear my narration. The nativity scene in the lobby did not have a baby Jesus in the manger. Apparently there is a Catholic tradition that I didn’t know about that you don’t put the baby in the manger until Christmas Eve. Because the chaplain was busy Christmas Eve, they scheduled the ceremony for the afternoon of the 23rd. The other bit of the video that you can’t hear me describing is that you can see our red van in the parking lot out the window of the lobby. Sometimes when I went downstairs I would just sit and stare at the van waiting for the day I can get back in it and go home. Here is the Facebook video we shot that day.

In my previous blogs about St. Vincent ICU I recounted what I called “The First Incident” and “The Second Incident” in which I had some problems with nurses who were not too keen on respecting my wishes despite my protests. Both of those incidents were entirely tied to the fact that I was on the ventilator and could not talk. However here at Seton Hospital, I was only on the ventilator at night so I really didn’t have very many problems. But there was a couple of minor incidents most notably one with a respiratory therapist named Laverne.

I’ve already mentioned that every six hours they give me a breathing treatment with albuterol. In addition to that they changed the piece of gauze that fits around my trach twice a day and they change the strap every other day. During the breathing treatments, the hose is connected to the trach mask but they have to remove the talking valve so that the mist can get in your lungs easily. Usually they come in, start the treatment which takes 6 to 8 minutes, change the gauze and then put me back on my talking valve. But because they are very busy sometimes they start the treatment and then walk away and come back later. Normally that’s not a problem but to get the gauze changed they have to sit me up in the bed straighter so that my head can tilt back and they can get underneath my fat chin. This particular time while doing all of that she left me in a very uncomfortable position without my call button in my hand. I didn’t mind her leaving while the breathing treatment was going on but I didn’t want to be left in an uncomfortable position. She got distracted taking care of somebody who needed her more than me which was no problem. But she shouldn’t have left me in that position.

When I talked to her about it later she gave me a lot of grief over saying she couldn’t be at my beck and call. She had other patients to care for. I tried to explain that I realize that. Just don’t leave me hanging. Change the gauze with the valve still in, get me and a comfortable position, make sure I have my call button, then start the treatment and you can leave me all day. I think I finally got her to understand but it took a bit of a debate.

There was only one other real problem I had with one of the nurses who I called in the middle of the night while on the vent. Despite the fact that I had my instruction sheet laying there on my chest telling her how to communicate with me and she was reading the notes, she didn’t seem to be able to follow them. The top item on my instruction sheet was “How to communicate with me”. But for some reason she skipped over that part and started asking me questions that were clear at the bottom of the page about bed positioning etc. I don’t think English was her first language. She looked to be Korean or Chinese or some sort of Asian and spoke with an accent.

There was another time where one of the nurses thought I needed something from the respiratory therapist when I really didn’t. He got a little testy with me when I said I wanted off the vent. That wasn’t a priority at the moment and he was busy with other patients. Later when I did get off the vent, I had the opportunity to explain to him I wasn’t the one called him and I didn’t really need him but I thought getting off the vent would be the quickest way to explain all of that. After the explanation we were cool.

Overall the experience with the nurses and therapists at Seton was much less dramatic than what I had been through at the St. Vincent ICU.

Here was the last Facebook post of the day [12/22/2016 5:09 PM ]