On perhaps four or five occasions over the past several months, I developed a pain underneath my tongue on the right side. Something was irritating my saliva gland. It was a stinging, burning sensation that could be quite uncomfortable. Typically, however, it would last a few hours at most half a day, and then would disappear for weeks.

Sometime either Sunday night May 22 or Monday the 23rd I had another appearance of this pain. I woke up Monday morning with some unrelated hip and leg pain severe enough that rather than take Tylenol, I broke into my stash of Tramadol which I have been prescribed for back and hip pain. I use the Tramadol about once or twice a month at most. One of the side effects of the drug is that it makes my mouth very dry. If my saliva gland was swollen, this side effect would be beneficial.

My pain was under control Monday without taking any extra doses although I think I might’ve done some Tylenol later in the day. The mouth pain continued Tuesday and Tylenol was sufficient to keep me happy. When I woke up with continued pain Wednesday morning I do I had to do something. I went to the Tramadol again and tried calling my Ear/Nose/Throat doctor. I really wanted to get to see someone today because the rain that morning was supposed to lift but it would be much more rain Thursday and Friday. If I couldn’t get in to see a doctor I would just go to the MedCheck on Main St. in Speedway which I have been to very many times… mostly for UTI problems.

I called my ENT and after navigating the voice menus I would have had to leave a message at the scheduling desk. I wanted answers quicker so I hung up and called my primary care doctor. I got a live person at scheduling and although my doctor did not have anything available, one of his associates had an opening at 12:30 p.m. so I grabbed it.

One of the complications of my disability is that all of my joints are contracted including my jaw. My mouth barely opens at all. It’s extremely difficult to brush the inside of my teeth. I have a tiny toothbrush that I use as best I can but it is still difficult to get to the inside surfaces. My dentist has always said, “It’s a good thing all of your cavities have been on the outside. I don’t know what we would do if I had to give you a filling on your inner side.”

The doctor gave me a Covid test and a strep throat test both of which were negative. She was unable to see inside my mouth under my tongue. If she had had a dental mirror she might have had more luck. In fact, I considered calling my dentist instead of a doctor. If you pressed underneath my chin in the area of the gland, you can tell it was a little puffy and it was tender to the touch. She prescribed amoxicillin and sent me on my way. I was happy with that realizing it was the most we could do. I think I might have taken some Tylenol later in the day but I got through Wednesday okay.

I woke up Thursday morning with terrible pain. I later told the doctors on a scale of 1-10 this was a solid five. I immediately went to the Tramadol and made the decision to stay in bed. I had my home health aide get me cleaned up and fresh underwear but I did not get dressed.

I suffered a good 45 minutes until the drug kicked in. About five hours later I decided I needed more Tramadol. With the exception of occasions in the hospital after my trach surgery, I had never taken Tramadol more than once a day.

I called my primary doctor again to ask what I should do now that the pain was worse. They said, “If it gets worse call us.” They never returned my call.”

One other bit of excitement, Barb had been in the hospital for a few days with anemia problems. She came home Thursday morning. We often joke that we take turns going to the hospital but we really didn’t think I would be going out to the hospital the evening after she came home.

I had been telling people on Facebook about my mouth problems. I posted this message on Facebook telling people Barb was okay home and I was feeling worse.

Around 5 PM I was still feeling miserable. After lying in bed all day I knew to roll over on my side for a while. I wasn’t sure how long I would want to be that way so I had Barb pull up a chair and sit with me. She likes to listen to audiobooks and she asked if I mind if she turned one on. I said okay. It was some fantasy story about vampires versus werewolves. I’m more of a hard sci-fi fan. Not so much fantasy. However, this story wasn’t bad and I sort of got into it.

After about a half hour I decided to roll back onto my back. The entire time I was debating if I should go to the hospital.

A new symptom suddenly arose. I realized that my tongue was starting to swell. When I rolled onto my back, it became more apparent that this was serious. My head was in a different position lying on my back and it became extremely difficult to talk. I told Barb what was going on and said, “I’m going to the hospital.”

Unfortunately, ambulance trips to the hospital or becoming a bit routine around here. We have a large canvas plastic coated mat with straps on the side that the hospital used one time to transport me on and off my bed. They let me keep it and it’s been very useful for ambulance transport. We put the mat underneath me and I feel a lot safer having the ambulance people dragging me around on it rather than just lifting me or using a sheet with no handles. An additional part of our routine preparation for 911 transport is that we have to remove my wheelchair, my Hoyer lift, and bedside table from my bedroom so that they could bring in the gurney. I also made sure to grab my iPhone and stuff it in my undershirt.

Somewhere along the way I’ve managed to click out a quick message on my iPad to Facebook saying “Going to the ER.

Carol was at work at her new job at the fairgrounds and would not be home until after 10 PM. We were confident I would be admitted so Josh agreed to transport my ventilator which I would need. We had previously been able to persuade private ambulances who brought me home to transport the vent but we had never been able to get the 911 people to transport the vent with me.

We wrestled me onto the mat and by this time my tongue was so swollen, that it was getting difficult to breathe. I have a trach with a device called a Passy-Muir speaking valve. It allows me to breathe in through the trach but then it closes when I exhale so that air could come out over my vocal cords and out my mouth. I could also breathe out my nose but my nose was stuffy that day. So I could breathe in but could not breathe out and it became impossible to talk. At one point we had to remove the valve so I could catch my breath by breathing fully in and out of the trach. Of course without the valve in, I could not talk.

I finally realized if we propped up my shoulders with a pillow so that my head would lean way back, we could leave in the valve and I could talk with difficulty. Normally when we call an ambulance I do the talking to the 911 operator. Barb has a slight tendency to ramble under such circumstances and not get straight to the point but I had no choice but to let her do the talking.

When you call 911 the first thing they ask for is of course your location. Through experience, I know that the ambulance is handled by the fire dispatcher. If you give them medical history without getting to the point that you need an ambulance, you end up wasting time talking to the wrong person. So we have learned that the first thing I should say is, “I need ambulance transport.” Then they immediately switch you to the fire dispatcher and you can give them the info. This time, after giving the address, the 911 operator immediately asked, “police or ambulance?” I don’t know if they changed procedures or if my address came up with a history of ambulance runs for both me and Barb that perhaps they correctly guessed was going to be an ambulance.

Barb still rambled a bit without getting straight to the point but it wasn’t too bad. I always feel like you have to prioritize your information with the most important stuff first. The fact that I was bedridden wasn’t as important as why I was needing the ambulance.

Among the things she said was that I had difficulty breathing. Usually, we are careful to say that this is a non-emergency. The operator said they would be here quickly, with lights and sirens. After Barb hung up she said, “I forgot to say non-emergency.” At the time I had my valve out and could not tell her I was glad. I was beginning to realize this really was an emergency. The thought crossed my mind that if I did not already have a trach, I would be dying right now.

Both fire rescue and ambulance arrived quickly. I had my head tilted back as far as I could we put the valve in when they arrived so I could talk. It was a bit chaotic in my bedroom with two paramedics, a couple of firefighters, and Barb all talking at once. At one point I had to yell, “Will everybody please shut the fuck up so I can tell you what’s going on. I don’t know how long I can talk!”

My mind was racing trying to prioritize information because I didn’t know how long I might be able to continue to communicate. I explained what was going on and that when they transferred me to the gurney we would have to immediately prop up my shoulders again and get my head tilted back as far as possible. We showed the EMT how to take out and put in the valve so that I could talk briefly and then catch my breath. He caught on quickly and was able to do so throughout the ride to the hospital. I’ve made sure that he explained thoroughly so the nurses how important this was and that once I was moved to the hospital gurney we would have to get me repositioned perfectly. He still had great difficulty understanding what I was trying to say because I couldn’t speak very well or very loudly. Normally I like to be very chatty with EMTs to distract myself from what’s going on. But when he wasn’t asking questions I just had to lie there and worry about what was happening.

Although they used lights and sirens on the way in, we did not go fast out with lights or sirens. I think we were at about 38th and Georgetown which is near where the ambulance is stationed. Someone came out at the stoplight to talk to the driver. She had to tell them twice that she couldn’t talk because she was transporting a patient. I couldn’t believe she had to tell them twice!

We arrived at the hospital at about 8 PM. We got me well repositioned on the new gurney and I was able to communicate fairly well with the nurses. Unlike during the ambulance ride, we did not need to continuously remove the valve for me to catch my breath. I was feeling infinitesimally less stressed by the situation. One stressful part of this is always the fact that I am completely unable to use a nurse call button. I told them that if they left me alone in the room, I wanted the valve out.

Last time I was in the ER with respiratory problems I had lots of familiar faces working on me. Several of the nurses recognized me and are familiar with things like how difficult it is to get an IV started. This time it was all strangers. I tried to convince the nurse that he would need the ultrasound machine to find a vein but he insisted on trying it on his own before eventually relenting and getting the device. I refrained from saying, “I told you so.”

Because of those delays, I never was left alone until the point when Josh arrived with my ventilator. I was also communicating much better at that point. My tongue was still a mess and the pain was bad but I wasn’t in such a panic mode anymore. Knowing that I was not going to be alone in the room was a huge relief. In the past, the procedure had always been to have someone meet me at the hospital and stay with me until I was settled in. However, hospital visits had become routine and I don’t longer felt like I had to have Barb or Carol be there with me. I’ve been able to go it on my own the past several times. This time however I was very happy to have someone there. Josh commented that he got to see me really quickly. Usually, you have to sort of talk your way into visiting an ER patient. When they saw him transporting a ventilator, they escorted him right in. I was extremely happy to have him there. Josh and I had the opportunity to just talk about sci-fi and TV shows and stuff and it kept me well distracted from what was going on. It was such a relief to be able to talk without having to prioritize every sentence!

When the doctor arrived, I got to tell them my history of the mouth pain off and on for a few months, the events of the past several days including my visit to the doctor on Wednesday, the extreme pain Thursday morning, and then my tongue swelling which was what led me to the ER. I told them I couldn’t believe the mouth problem alone would make my tongue suddenly swell up. But I had taken amoxicillin before. I had three doses in the past 24 hours and the tongue problem didn’t occur until almost 9 hours after my most recent dose. I also told them I had experience with Tramadol. It looked like an allergic reaction but there was nothing that could’ve caused it.

They gave me Benadryl, a steroid, started IV antibiotics, and ordered a CAT scan of my house and neck.

Josh was giving phone updates to Barb. Carol got home and although she was hungry and tired I asked if she could please come. It was really different than my usual hospital visit. I was so happy to see her arrive just before they took me for the CAT scan.

I knew that transferring me on and off the table for the CAT scan would mess up my head position and I would not be able to talk or perhaps breathe well. I was going to have Carol remove my speaking valve before they took me to CT but they moved quickly and I didn’t get a chance. I thought I could tell the CT tech everything I needed to tell her but when we got to the CT room it was noisy and I wasn’t talking very well. She couldn’t understand anything I was saying. I tried to get her to remove the valve but she didn’t know what I was talking about. I kept saying “Wait, wait…” But then when I would talk they didn’t understand.

They finally just told me to tough it out. I was able to breathe in through the valve and then with difficulty could squirt air out my mouth to exhale in a kind of panting. I knew I would have to hold my breath during the actual scan. They were using contrast in my IV which can make you feel hot and a bit nauseous. I was ready for it and that wasn’t bad.

Just transferring from one table to the other is scary for me when I can’t communicate. My arms tend to flop out the sides of the gurney and I can get my fingers scraped on doorways. I had managed to warn the EMT about it going in but did not have a chance to tell the CT tech to be careful. There are lots of other things that I could not call to their attention such as my kneecaps which can dislocate easily so stay away from my knees. I also have a urine bag hanging from my leg. One time when transporting me onto the CT table even though I could communicate I didn’t realize they grabbed the bag when dragging me over and it burst. There was no opportunity to talk about any of these details. Breathing was a priority. Bags of pee were unimportant.

I made it back to my ER room with Carol unable to speak very much. I was trying to tell her what I needed but she could not understand. I finally got her to realize I needed the pillow under my shoulders more but she wasn’t strong enough to do it. I said, “Get nurse.” She went looking for one rather than hitting the nurse call buzzer. The hallway was empty. We were both feeling pretty helpless.

She finally found some help and they got me in a good position to communicate again. I just kept thanking her over and over for being there.

The ER doctor who came in to give me my results was different than the one I had spoken to at first. She said that they found evidence of a saliva stone in my mouth. It was apparently blocking my saliva duct in the same way that a kidney stone or gallstone blocks a duct. I had never heard of anything like that. They were going to admit me. I would get a consultation with an ENT doctor in the morning.

I had to remind them that because I use a ventilator, I could not go to a regular room. I told them that they had previously tried to get progressive care to take me but they always refused and insisted I go to ICU. The ER doctor agreed with me that it was kind of a silly policy but I assured her in my experience that there was no way around it. They eventually came to that same conclusion and got me a room in the ICU.

I was soon visited by one of the Critical Care doctors who would be managing my care in the ICU. This was unusual because typically my case is managed by Internal Medicine or as they sometimes shorten it simply “the medicine team.” I didn’t think it would make much difference but in the end, I later concluded it was not such a good idea to be under Critical Care. More on that later.

It did not take very long to get me a room. I was hoping that Carol could come upstairs with me so that she could make sure that I got my head tilted back properly so I would be able to communicate with the nurses. But it was now approaching 2 AM long after visiting hours and they were reluctant to let her go up. I finally agreed and told her to go home. She would be babysitting the grandkids all day Friday and working Friday night so I told her perhaps I would see her on Saturday and she could bring my laptop or anything else I needed. There was no sense in having Barb or Josh trying to bring my laptop I wasn’t speaking well enough to use my dictation software.

When I got to the room in the ICU I made very certain that everyone understood how important it was to get my head in the proper position so that I could talk and breathe easily. Unlike the situation with the CT technicians, I was able to explain what I needed before they transferred me to the bed.

The last time I was in the ICU, it was with a respiratory inspection in February. I had been experiencing terrible chills and fever. I was in the middle of a very bad spell of chills when they told me, “The first thing we do when you get here is to give you a bed bath.” They do not use particularly warm water and I about froze that last time having already been severely chilled. For this visit, I had a fever of about 100° so getting cleaned up felt pretty good.

At this point, I was anxious to get on my ventilator and get some sleep but I knew that there would be lots of intake questions to answer. The nurse said that since I had just been there a few months ago she could copy most of my information from my previous visit. They had me positioned well enough that I could talk reasonably well so if I did have to answer a lot of questions, I would’ve been able to.

One of why favorite questions that they always ask is, “Do you know where you are?” I really enjoy giving the following standard response… “I am in the ICU of Ascension St. Vincent Hospital W. 86th St., Indianapolis, Indiana, United States of America, the North American continent of the planet Earth which is the third planet in our solar system which resides in the Orion arm of the Milky Way galaxy which is part of the local galactic cluster of the universe.” The nurses get a big kick out of that. The last time I used that line, one of my nurses replied, “What? You don’t know the latitude and longitude?” I forgot to mention that while I was lying in bed at home waiting for the ambulance to arrive, it occurred to me that I had not looked up the latitude and longitude of St. Vincent Hospital and memorized it as I had originally planned.

For future reference it is 39.909 North, 86.197 West L6

It was about 3 AM I was fully settled in and able to get on my ventilator and get to sleep. There is a shift change at 7 AM and I always want to be off the ventilator prior to that. I don’t want to be dealing with a strange respiratory therapist to take me off and I want to be able to communicate with the new nurse who also comes on at 7 AM. So I instructed the respiratory person to get me off at about 6:30 AM. She let me go until 6:45 And I was grateful.

After getting off the ventilator, I could assess my situation. My pain level was pretty much less than one. My tongue was feeling much better. I estimated it was perhaps 80% back to normal. It still felt kind of thick and stiff. I discovered I do not need to have my head tilted back far in order to speak or breathe. That was a relief because trying to sleep with my head tilted back was pretty uncomfortable. It was only because I was totally exhausted that I was able to sleep well for those few hours.

Whenever I have my speaking valve out, one of the ways I can get people’s attention is by ranking a clicking sound was my tongue. I discovered I could not make that sound so I knew that things were not back to normal. After the nurse helped me call home and I spoke to Barb to tell her how I was doing. Then I did the following Facebook live video to let everyone know what was going on with me.

Eventually a female resident from the Critical Care group came in to discuss my case. She said they had called for consultation from ENT doctors who would decide whether or not I needed surgery. She thought that they would be very conservative and not recommend surgery but she could not be sure. I explained to her the difficulty that my mouth will not open very far as a result of my joint contractures. I thought that surgery to get under my tongue will either involve going up through my chin or would require pulling teeth neither of which would be any fun. Still, we had to wait for official word from the ENTs. She said that later in the morning she would be back for rounds with the entire Critical Care team including the attending physician.

They would allow me to have my regular medication as well as an oral antibiotic (IV not necessary). However, I could not have any food or other liquid in the event that they might want to do a procedure on me later in the day.

I tried to occupy my time by taking a nap or watching TV. With my head still tilted backward somewhat I couldn’t really see the TV but I just listened to MSNBC until I couldn’t take it anymore. It was wall-to-wall coverage of the aftermath of the tragic school shooting in Texas. I never did get a map and I finally had the nurse turn off the TV.

Sometime in the late morning, the Critical Care team made their rounds but I did not get to speak to them. They stood in the hallway and talked about me at a level I could not hear and with no opportunity to ask follow-up questions. That made me extremely frustrated. That’s the major problem with being in the ICU when you aren’t really very sick. There are accustomed to patients who are not able to participate in their own health care decisions. Although I had had such issues with the Internal Medicine people not communicating with me well in the past, it was much more blatant being under the purview of Critical Care. At least with Internal Medicine, I did get to see the attending physician during grounds on previous visits and ask my questions and express my concerns.

From time to time throughout the day, my nurse tried to contact critical care to see why ENT had not been to see me yet. Initially, they were surprised I had not yet heard anything, and then they tried to no avail to get any action from the ENT group. Meanwhile, I haven’t had anything to eat very little liquid since 4 PM the day before. The nurse tried to get my G-tube formula ordered so it would be ready once I was cleared. She could not do that.

Finally, at 3 PM the resident returned to tell me that they had finally gotten in touch with ENT and that they had left the building. There would be so further action today and they promised they would be in to see me “first thing tomorrow.” I was furious that we had wasted the day. I told her I wanted to eat ASAP and that considering none of the medication I was getting was via IV I wanted to be discharged immediately tomorrow after the visit from the ENTs. I was confident I would not be getting the surgery. She agreed. They would continue with oral antibiotics and some steroids to try to bring down the swelling in my tongue further and as long as there was not going to be surgery, I could go home Saturday.

If I had been on a regular diet, the next step would be to call the food service and get me a cheeseburger. But when you are on G-tube feeding it doesn’t work that way. The food has to come from the pharmacy. The resident has to prescribe it like a drug. They can’t do that until I’ve been evaluated by a dietitian to get the proper “dosage”. This isn’t something new. I’ve been getting this same nutrition three times per day for six years. I should not have needed clearance from a dietitian just to eat my regular meal.

The last time I was in the hospital I saw the dietitian and after looking at my usual intake she recommended that I add a multivitamin to my diet. That was a useful suggestion and I did so. This particular dietitian was also going to recommend that when I got home, I add 30 mL of protein supplement to my diet. That wasn’t something she was going to insist upon immediately. Again, it was a useful experience. But it did not need to delay me getting fed. By the time her recommendations made it to the resident, the resident wrote the orders, the pharmacy sent the formula, and the nurse was able to feed me it was 5 PM. A full 25 hours since my previous meal.

In addition to talking to the dietitian I was also visited by the case manager and we began making arrangements in advance for me to go home the next day assuming that I was not having surgery. She even suggested we go ahead and schedule my ambulance ride which I appreciated. The last time I tried to get out of the place we ordered an ambulance around noon and it took over eight hours to get there.

The evening shift change came at 7 PM and I got acquainted with my new nurse who was nice. Also met the nighttime respiratory therapist and made plans to get on my ventilator at about 9 PM. I was able to get another feeding just before I got on the vent. I got on the vent a little after nine and got to sleep pretty quickly.

When I’m on the ventilator at home, I can operate my iPad with pushbuttons and message Barb or Carol if I need anything. I also have a buzzer that will wake up everybody if they don’t hear my messages. Once they are in the room, I have a voice generating program called Cough Drop customized with various phrases that I might use such as, “need suction”, “raise bed”, and when all else fails one that says, “Take me off the ventilator so I can talk.” In the hospital, I don’t have that capability.

At one time I had a box that would let me do some of that kind of stuff if I had my iPad and/or laptop in the hospital but keeping such equipment on the hospital table in front of me overnight is difficult. Keeping my pushbuttons comfortably in my hand in the hospital is problematic. And right now that particular box needs a little work. I just didn’t have time to pull everything together before coming to the hospital. So I was going to have to rely on other means of communication.

I always explain to the nurses and the respiratory people my means of communicating when I can’t talk. I’m unable to shake my head yes or no so I wiggle my eyebrows up and down to mean yes and I twitch my mouth left and right to mean no. Even when I haven’t been able to explain these signals to nurses ahead of time, most of them have been able to recognize that a vertical motion in my eyes means yes and a horizontal motion in my mouth means no. Other systems such as blinking once or twice for yes or no are impossible to decode without already knowing the system in advance.

In the past, I have told the nurse in the event you can’t figure out what I want via yes and no questions, simply deflate the cuff of my trach and I will be able to talk briefly. But with my tongue messed up, I wasn’t sure that was going to work and I was pretty sure I would be trying to get as much sleep as possible. I didn’t even bother giving the nurse that option because I wasn’t sure it would work. Furthermore, as I already explained, my way of getting someone’s attention when I can’t talk is to click my tongue. With my tongue still swollen, I couldn’t do that.

I woke up a couple of times during the night. My blood pressure alarm went off a few times. As an experiment, I tried mouthing the words “BP okay?” while looking at the blood pressure monitor. Much to my surprise it only took two attempts for the nurse to correctly read my lips. She reassured me it was okay. Later that night I saw her and the respiratory therapist poking at buttons on my ventilator. I was able to ask, “what’s wrong?” Again, it only took a couple of tries for her to be able to read my lips and tell me they were just curious about what my settings were. In the morning, once I was off the vent I told her she was the absolute best lip reader I had ever encountered. She said that she had previously worked in the head and neck unit and had gotten a lot of practice there but was out of practice now that everyone was wearing masks.

With the exception of briefly waking up a couple of times as described above, I slept pretty solidly from 9 PM until 1 AM. After that, I was wide awake. One positive development was I discovered I could once again click my tongue. That told me it was back to normal.

I couldn’t get back to sleep. I just lay there thinking about how angry I was over the way things had gone the day before. I wrote the speeches I would be giving the doctors come morning. At about 5 AM, I gave up trying to sleep and told the nurse I wanted off the ventilator. Again she had no difficulty reading my lips which was amazing.

Of course, I was back under orders for no food or water until a surgery determination was made. The nurse asked me if I wanted to clean up. I had not been washed since that bath at 2 AM the night I arrived. I was surprised she offered so close to the shift change. She had the time and some help so I got another bed bath. It helped pass the time.We also passed time just talking. I told her about my unsuccessful efforts to write sci-fi.

At 7 AM there was a shift change. My new nurse remembered me from a previous visit. She had already heard my joke about my location in the universe so I told her I had intended to look up the latitude and longitude but didn’t have the opportunity. I promised if I ever saw her again I would let her know the exact coordinates. We got to talking about the upcoming race. She had grown up in Speedway and talked about the fun they had encouraging people to throw empty beer cans in their yard when she was a teenager. They would collect them and get money for recycling.

A different Critical Care resident dropped by about 9 AM. She didn’t know when the ENT doctors would be by but she reassured me that if things went as planned, I could definitely go home. I gave her an earful of my complaints about the way things went the day before including not being able to be a participant in the rounds discussion with the attending. She explained that the attending preferred to do rounds in the hall but she promised she would speak to me immediately afterward to keep the communication going. Not exactly the kind of response I wanted but it was the best I was going to get. That’s why in the future I’m going to insist that my case be managed by Internal Medicine and not Critical Care. They just aren’t equipped to deal with a patient like me.

Two female doctors from ENT finally showed up a little after 9 AM. They tried unsuccessfully to look in my mouth. They tried unsuccessfully to stick a finger into my mouth. After a brief conversation, I told them I would follow up with my own ENT and that they should send me home. I would get more antibiotics and steroids for a couple of days but I was free to go.

Soon afterward, I got word that the ambulance would not be available until 6 PM! This was an ambulance we had already scheduled a day prior and they still couldn’t be there until late in the day. God only knows how long I would’ve been there if we had waited to schedule it. The nurse helped me to call Barb and tell her I was coming home it would not be until after 6 PM and that assumes they were on time. I was free to eat again. Soon, I got the word they had called a different ambulance company which would be there about noon. I had to call Barb back again. I was very happy.

I was starting to get a backache from lying in bed for so long so I had her give me a Tramadol for the ride home. We packed the underwear I had worn into the ER. Picked up some supplies for free. I got another feeding at about 11:30. They arrived at about 12:30.

I no longer had to worry about such things as getting my head in the proper position. They had no difficulty transporting my ventilator home which would save Carol or Josh a trip up there to pick it up. Unfortunately, somewhere along the way, we lost part of my ventilator hose. I don’t know if a nurse or respiratory person threw it away or if it fell off in route. I was short on supplies at home so I was really upset that we lost part of my tubing. I got by okay.

This time, I was able to have a nice conversation with the EMT on the way home. One of the things I asked him was if paramedics ever really did an emergency trach in the field. I told him about my tongue swelling and how much trouble I would’ve been in had I not already had a trach. I wondered if they ever really did that, or if it was just something on TV or in movies. He said he thought they could but it would be extremely rare.

When I got home, I discovered there was other tubing missing. The valve on the end of my G-tube had been removed. Apparently, the nurse just put my feeling directly into the G-tube without using the valve. I was fortunate that I still had one in stock.

Much to our surprise, a strange home health aide showed up at 6:30 PM to put me to bed. My regular evening aide had called off and they sent a replacement without telling us. Somehow the hospital had told them I was coming home. Still, I had only been home a few hours and it was straight from the ambulance to bed. I did not need anyone to put me to bed. The next day I gave the agency an earful about don’t send people unnecessarily and don’t send a stranger replacement without giving us a heads up!

The next day, Sunday, was race day here in Indianapolis. Last year, I did not have a home health aide available on race day and I had to watch the race in bed on my little TV. I was anxious to be able to get up after several days in bed and to be up to enjoy the race on a big TV. Another reason I wanted to be sure to get up is to watch the military jet flyby at the opening of the race. My house is less than half a mile from the Speedway. I love to go out in front of my house, look back east towards Georgetown Road, and watch the jets fly over.

My home health aide, a wonderful woman named Tre’Sean, fought her way through the traffic to get here and get me up and dressed. Not only did she suffer the Greatest Spectacle in Traffic Jams, but she had also recently been having problems with severe pain in her shoulder. We got her some Tylenol and she was able to push through the discomfort although it was really rough on her by the time she was finished.

Typically, the Indy 500 is blacked out on local TV. However, I had subscribed to the NBC streaming service PeacockTV in the hopes that it would not be subject to blackout. I had subscribed for just one month during the Winter Olympics. I canceled and then resubscribed in early May so that I could watch their wall-to-wall coverage practice and qualifying including stuff that was not available on TV or cable. The local TV station of course would not tell you that you could subscribe and watch the race online. They wanted to make sure that you reached the time delayed replay of the race that evening.

When 11 AM rolled around, I logged in and was thrilled to see that coverage was on despite the local broadcast blackout. I had prepared for the possibility of using a VPN to hide the fact that I was in Indianapolis but that was not necessary. That means that friends and family who are willing to pay $4.95 but did not have the technical expertise to use a VPN to spoof their location would be able to watch the race. I quickly posted a Facebook message telling everyone that they could get the race on PeacockTV. I also Sent a couple of private messages on Facebook messenger to let friends and family know how to get the race in case they missed the public post.

One of the people who thanked me for posting that information is a guy named John who bought out our share of our cabin on Cordray Lake in Brown County. He sent a photo that they had set up a flatscreen TV on the boat dock by the lake and they were watching the race on Peacock thanks to my tip. I presume he was using his phone as a hotspot or streaming it on his phone and Chromecast to the TV. I had to laugh hard. I remember for years and years we would go to the lake on Memorial weekends and try to watch the race. If we went up on the roof and rotated the antenna sometimes we could pick up a very fuzzy picture out of Louisville Kentucky on a 25-inch analog TV. In later years, the only internet I had was dial-up over a phone line that wasn’t fast enough to stream music let alone HD TV. Technology sure has come a very long way.

I also posted a phased message here letting people know I was going to do a Facebook live video of the flyby from in front of my house. My video which is embedded below did not turn out very well. But check the link to this post by clicking the Facebook icon before this sentence. My cousin Kathy who was at the race sitting on the main straightaway got a phenomenal video of the flyby right overhead.

The National Anthem was scheduled for 12:18 PM with the flyby at the end. I started my live stream at 12:14 in the house because I can’t see my phone in the bright sunlight. As is our tradition, we were joined by my neighbor Nick and his daughter Madison who always enjoy watching it as well. Much of the video is us standing around waiting for it and Barb and I talking about our recent hospital visits. When the Thunderbirds finally came by, they sort of snuck up on us. Usually, we can hear the jets coming from a long way away. They were also unusually low and I was just barely able to see them above the roof of my garage. The location of my iPhone mounted on my wheelchair armrest was even lower so the video didn’t really turn out very well. The actual flyby occurs at about the 11:50 mark in the video.

I got back in the house to watch the rest of the opening ceremonies and much to my disappointment, the Thunderbirds made another pass at the singing of, “Back Home Again in Indiana” and I missed it.

Somewhere along the last several paragraphs, you’re probably asking, “What does this have to do with Chris’ hospital visit? In many ways, nothing.

I wrote this part because of what happened next. I found myself getting very emotional at the opening of the race. It was fantastic to see a full crowd again after two years of the pandemic. The weather was perfect. I’ve gotten to watch a great deal of practice and all of the qualifying this year. I began to ask myself, “Why is it so important for me to go sit out in the middle of my street to watch some airplanes fly over?” I found myself with tears in my eyes when I realized the answer. Watching those planes fly over each year is the last remaining connection I have to the event. Somehow, I feel like I’ve participated in the festivities by watching military jets fly over on Memorial Weekend. Last year, when one of my favorite drivers, Helio Castroneves won his fourth Indy 500, I had to lay in bed and cheer with tears in my eyes. This year I was up. The race was back to normal. I got to see the flyby not just hear it.

I thought about the first time my dad took me to the track when I was five years old. I thought about the countless days I had spent at the track in my college years roaming around Gasoline Alley with my video camera talking to drivers and mechanics. I thought about the years spent watching the snowy picture at the lake. I thought about the first time I got to actually go to the race. I thought about the article I wrote for Indianapolis Monthly Magazine about that first experience. I thought about the fact that under the guidance of new owner Roger Penske who is my hero, the track would finally get to grow and evolve under his expert guidance. Indy was back. I was there to witness it. And all of this came within a few days of one of the most terrifying and frustrating medical experiences of my life.

So I cried for a few minutes at the beginning of the race and then I enjoyed every minute of it.

Monday was the holiday and I spent time catching up on things I’d missed while in the hospital. Tuesday I got on the phone call my own ENT doctor appointment. I will see him Monday, June 13.

Then something really weird happened.

My mouth had been feeling okay since I got home. Throughout this experience, there was a tiny place under my tongue that felt like a little soft bump almost like a tiny polyp no more than a couple of millimeters in size. In the days since I been home, that spot turned hard. When brushing my teeth Tuesday morning, I had my aide gently brush under my tongue. The tiny hard place came loose and I was able to spit it out. It looked to me like a scab but it had a hard core in it. I don’t know what it was but underneath my tongue feels 100% normal now.

I will have to talk with the ENT to see what he thinks but this whole thing might be over with!

I had a couple of days of antibiotics and steroids to take. The steroids made me very jittery Tuesday afternoon and evening. I went to bed early and decided to stay in bed Wednesday. I quit the steroids one dose early. I finished out my antibiotics despite some intestinal issues they caused. I will spare you the details. As I am completing this blog, it is Thursday evening and things are pretty much back to normal. No mouth pain. No more intestinal issues.

My only problem now is that my aide with the bad shoulder got into a disagreement with her boss for taking time off. She ended up getting fired. Now I have to train a new aide. I’m really going to miss the previous one. We will remain friends even though she no longer works here.

So, that was a story longer than a quick Facebook message. I hope you enjoyed it.