Thursday, December 8th was my first full day of having the trach tube. I was once again speechless as I had been when I was intubated. I learned lots of lessons from those first days. I wish I had had more time being able to talk before having the trach and more time to prepare for losing my voice again. But I had spent much of the past day or so going over things in my head about how I would adapt to the situation.

When dad came in Thursday morning I had him set up the iPhone so that I could type messages to him. I reported to him I had had some pain overnight but the pain medication they gave me took good care of it. I then told him that I was going to write some messages to the nurses and I wanted him to transcribe them on a piece of paper. I had already planned that it would be three iPhone screens worth of messages and I would have him write them all down on a single page. I told him to sit down and relax while I typed away. When I finished soon after, here is what the three messages said.

How to talk to me
Eyebrows up and down =Yes
Mouth side-to-side=no
Wink=I’m okay
Spit swishing =need mouth suction
Click tongue =Need to use message paper. You point to row then I do click then you point to letters and I click to select

I’m quoting these messages from my iCloud archives. I’m not sure that the phrase “Wink= I’m okay” was originally part of that page. I may have added it later and had dad write it in to the paper version later. I don’t really know when I added that particular communication gesture. I remember at the beginning I had the yes and no but on several occasions I tried to mouth the words “I’m okay” and many of the nurses were unable to read my lips. I thought that the words were distinct enough that you should have been able to understand me. All I know is that there were sufficient number of nurses who could not get it from lip reading so I invented the wink as a new way to communicate that fact. Once I had instructed them how to communicate with me, the next message talked about my specialized nurse call button.

My call button is in my right hand and is very touchy! Keep covers, tubing , and everything away.
Put rolled up washcloth under my wrist. My first finger on long metal part, thumb atop shorter part, blue part toward palm

Those particular instructions probably were very difficult to follow. We always tried to have the nurse take a good look at how my hand was positioned and how I was holding the button before moving it. Dad or Carol always put the button in my hand before they left me alone for the night. As I mentioned earlier, one of the problems was that I could not operate the iPhone and hold the nurse call button at the same time. So my only means of communicating at night was by having the nurse point to the message paper row by row, column by column and spelling out words one letter at a time. The final message was instructions on how to safely reposition me.

How to move me
DON’T touch knees! The kneecap dislocate easy. Keep knees apart when lying flat but put side-by-side when rolling me. Roll me using hips and shoulders

The issue with my sensitive knees was one that really worried me. I had always relied on my ability to speak to that I could warn people not to grab my kneecaps. It must’ve been divine providence but I spent nearly an entire month in this hospital and another one and never once did my knees get kinked.

Once needs instructions were written down, I would leave this piece of paper lying on my chest throughout the night so that anyone who walked in might see it. I would tell each nurse to be sure to point it out to the next nurse during the shift change. Although this “User’s Manual” on how to operate me wasn’t always effective, it was better than nothing at all.

Bodily Functions

I’m going to issue a TMI warning at this point. (Too Much Information). This next section deals with some rather gross stuff.

Ever since I had the G-tube installed last May, I’ve had lots of trouble with constipation. After consulting with the gastroenterologist he suggested I take a dose of Mira-Lax as needed to keep things going. Through experimentation we had found that about one dose per week was enough to keep me going reasonably well. The problem was with all of the confusion and lung problems I couldn’t remember when I had had my last dose. I had to now been in the hospital five days and still had not had a bowel movement.

One of the things that concerned me was they had been giving me antibiotics. Traditionally that gives me diarrhea so I was a little bit reluctant to take a laxative if the antibiotics were already going to make me loose. Dad and I talked about it via my iPhone message and I decided to delay taking the laxative till later that day or perhaps the following day. As things turned out I took a dose of the Mira-Lax early the next morning.

Speaking of antibiotics, I don’t think I fully addressed the issue of whether I did or did not have pneumonia. Some of the Facebook messages posted by my sister Carol said I did or did not have pneumonia at various points. Some of my messages may also have been confusing. But here is the bottom line on the pneumonia issue. When I first went into the ER on December 3 they took an x-ray and said that my lungs looked clear. They later took a sputum sample and did a culture and discovered bacteria so based on that they concluded it was technically pneumonia. There was a second chest x-ray at one point but I don’t think I ever heard any of the results from it. So based on that sample, they gave me a few days of antibiotics but I really wasn’t on anything for very long.

The other topic of conversation with the nurses and doctors was my urinary output. I have an absolutely enormous bladder. It rarely empties completely. They can do an ultrasound scan on your bladder to estimate how much is in there. I was reluctant to let them do a scan because I knew they would find 700-800cc or more which would be very uncomfortable for the average person. I knew if they did a scan then they would want to catheterize me. I don’t even start to get uncomfortable till we approach 1100cc. They were not giving me all my usual medication and so I wasn’t peeing as much as I usually do. The problem is, those medications lower your blood pressure and they were already concerned about my blood pressure being low especially while I was sleeping.

I communicated some of that to the doctors by iPhone message but I found one other message shortly after that which I thought was kind of funny and worth quoting here.

Message for doctors
I peed right after you left.
I couldn’t pee while you were all standing around threatening me with catheter. Also note that I wear diapers at night which can’t be measured. I know when I need catheter trust me.

I ended up winning this argument. Despite their continued concern about my bladder, I never did let them catheterize me. This may seem like a minor victory but I needed a win to boost my spirits.

Weaning off the Ventilator

The plan was to try to have me off of the ventilator and just breathing normally through the trach as much as possible. This first day I was able to stay off the ventilator about five or six hours. From time to time I would start to get congested. The trach would make a rattling noise and at times it would get difficult to breathe when the congestion would appear.

The solution is to suction out the trach using a catheter. It had to be done by an RN. A regular patient care technician was not allowed to do it. They would open up a little kit that contained a pair of sterile latex gloves. Most of the latex gloves they just pull out of a box hanging on the wall are clean but not completely sterile. Their purpose is to protect the nurse or caregiver from my bodily fluids. However because you’re going to be sticking tubes into the trach directly into the lungs you need to be completely sterile.

The gloves in the kit have the cuffs turned up so that as you pull them on you are actually grabbing the cuff from the inside and only rolled the cuff back after it’s on your hand. They make a big deal out of the fact that one of your hands (your right hand if you’re right-handed, left otherwise) is your clean hand. Once you get that glove on you never touch anything except for the catheter tube itself. The other hand is your dirty hand and it can touch just about anything.

Once you get the gloves on, you hookup the catheter to a suctioning tube. There is a little hole at the top of the catheter that you can put your thumb over to either turn a suction on or release your thumb from the hole so that it leaks and doesn’t suck. With the suction off they stick the tube down your trach until they feel resistance. Basically the tube is hitting the Y branch in your windpipe where it splits to go to each lung. Then they put their thumb over the hole and slowly pull the catheter out while making a circular motion like you were stirring a cup of coffee.

Below is a YouTube video that demonstrates the process. In this video they set up a small container of sterile water to rinse out the catheter however they were not doing that part of the process at St. Vincent. This particular video was the only one I could find that was closest to what they did at St. Vincent.

All of the setup of the suction that they describe in the video was already in place. So it goes much faster than this particular video implies. But it would still take a considerable amount of time first of all to round up a nurse, she had to get the kit open, put on the gloves, connect the tubing, and do the procedure. Although they could make multiple passes of the tubing if the first one didn’t clear out completely, after one session they always threw away the tube. That means the next time they had to open a new kit and start from scratch. We asked if they could re-use the catheter to speed up the process. There were a couple of times where I was getting a little bit of distress waiting for them to get things set up. It took for a while to get a feel for when I really needed it. I didn’t want to ask for it at the first sign of a little rattle in my breathing. But I did not want to wait until I was in real distress because it took time to get things going.

Throughout the first day, I think I only needed suctioning two or three times over the five or six hours that I was off the ventilator. So it wasn’t too bad. By the time dad was ready to leave for the day I was ready to get back on the vent. I didn’t want to be off of it at this point at least unless there was somewhere on there with me who could call the nurse quickly if I got in trouble.

That pretty much describes my first full day of having the trach. The next day would be a very eventful day that included a visit from friends, surprise support from hundreds of miles away, and the dreaded “second incident”.

To be continued…