A tracheostomy is a procedure where the surgeon makes a small incision in the neck into the trachea (windpipe). Then a small tube is inserted into the stoma (hole). The tube, refereed to as the trach, has a small balloon that is inflated to block the airway. This stops saliva and food from getting into the lungs and helps to hold the trach in place. (There is also a strap that goes around the neck to help secure it.)

The balloon is called a cuff. For most, the cuff can be partially deflated which allows for enough air to pass the vocal cords to let the user speak. Because of my weakened throat muscles I have to keep mine full.

This immediately changed my ability to communicate. While I had been using my eyegaze computer for going online, now it is the main way I communicate. This works when I am lying in bed and nothing is being done to me. Unfortunately having the trach means I must be suctioned, both mouth and lungs (via the trach). This happens several times day and night, and the computer gets in the way.

So my backup lo-tech solution is a clipboard with a sheet that has the alphabet printed out in frequency of use order. I use my toe to point to letters and spell out words., obviously limiting and often a challenge for the reader if words are long. This is why it was important for me to have an advocate with me throughout my 3 week recovery stay at the VA. This was fulfilled by an army of friends and family, for which I am incredibly blessed and eternally grateful. During my entire stay there was someone at my side, helping me to communicate with the nurses. The staff at the VA were amazed at how many people came to help.

A little catch up is in order, I'll try and fill in some blanks left since leaving Florida.

We had a good trip back, except for the unplanned day spent at the St. Louis VA getting my feeding tube replaced. What a difference there is between the various VA hospitals! I feel blessed to have the Minneapolis VA and the great crew at the SCI/D (spinal cord injury/disability) clinic to work with.

As Grace's earlier post indicated, we spent a few weeks in an RV park when we arrived in Minneapolis, it was only blocks from our old house which felt homey and allowed Grace to immediately get back into school and connect with her friends.

It was also where I started having difficulty sleeping because of choking on saliva as my throat muscles weakened.

We found an apartment, albiet a bit expensive, but the location is convenient and comfortable. It was a little more than a week before we had to call the ambulance to get me to the VA after several nights of trying to find a position to sleep in, without gagging.

The night we gave in was the third of no sleep. I was accompanied by good friend Ephram, who stayed with me in the ER through the morning, keeping me awake. Then Keya took over for several more hours while we waited to get in for the tracheostomy procedure.

Fortunately Keya had recently returned from a vision quest, so had some amazing things to share.

Next post I'll pick up with the trach...