As i am sure most of you know i have refused a trach however my reasoning or lack of same is not meant to influence. I have just read a wonderful post on BT by Harry AZ and he said i could share it;
Noodle, I had a trach installed last June. Since this was an unexpected event, it was quite an adjustment to my lifestyle. I went to the hospital with a suspected mild-case of pneumonia and came out with a trach and feeding tube. The feeding tube was something I was planning on, but the trach was a huge shock.
Although the trach was a huge surprise, I want to state up front that the trach has turned out to be a blessing in my life. I am on the ventilator only when I am in bed. During the day I am in my wheelchair without the vent, doing business as usual. I have found the ventilator to improve my energy level, and, perhaps, has helped slowed the progression of the disease. I can detect very little loss of strength in the past ten months.
Initially, the adjustment was a difficult one, but my family has been wonderful in helping me make this adjustment. I have taken Zoloff, an antidepressant, since being trached. I have no idea how I would now fare without Zoloff, but I tend to leave things alone while doing well. I have not experienced any depression, other than the first few weeks.
The tracheotomy procedure calls for a general anesthesia, while the surgeon cuts a wound large enough to allow the installation of the trach, which has a curved tubular structure inserted into the trachea with an opening pointing downward toward the lungs and a second opening outside the stoma. Most trachs have an inflatable cuff which restricts the flow of air upwards into the mouth and sinus cavities.
The wound is painful and sensitive for about 3-4 weeks until it heals. I had some stitches which were removed after the first week. After the wound or stoma has healed, it is relatively pain free; I have my trach yanked on all the time without experiencing any pain.
The most frightening part was losing my voice. My operation was not anticipated, so I did not know what to expect. About two weeks following the operation, a nurse walked in and said we are going to let you talk today and introduced me to the speaking valve. The speaking valve is a one way valve which allows air to be inhaled but not exhaled through the trach, and, by deflating the cuff, the patient can force air over his vocal chords. This was a most encouraging event in my life and left me in tears, knowing I was able to talk. The vent is disconnected while the speaking valve is in place.
Noodle, the primary difference in trachs is whether they have the inflatable cuff. I know of one patient who claimed he could not adjust to the cuff and, therefore, he uses a trach without the cuff. I would definitely recommend you try and adjust to the cuff, and I am sure your surgeon will insist on the same. The program works better with the inflatable cuff. The trach is something I know is there, but does not cause me any discomfort.
The trach and associated equipment does require daily maintenance, but can easily be done by a member of the family, and we find that caregivers are easily be trained to perform this maintenance. It needs daily cleaning and dressing, which takes about 5-10 minutes. I need suctioning a few times a day, which probably takes another 15 minutes total. I highly recommend the Ballard suctioning system, as it will save a lot of time.
Although the demands on the caregiver are not intensive, it is recommended you have a caregiver present at all times because of the critical nature of the ventilator system. I can count on one hand the number of times I have aroused my caregiver from a good nights sleep.
I want to close by stating my tracheotomy has overall been a very positive experience. The ventilator provides my body with a very restful night’s sleep and keeps my body well oxygenated. The trach also allows suctioning of the trachea which keeps it clear of mucous, fluids, and food particles, which helps ward off pneumonia and other infections.
I feel PALS are being misled when they are encouraged to not have a tracheotomy and ventilator because death is a better alternative. Prior to my operation, my ALS representative told me not to have a trach, because I would regret it. I recommend a trach for PALS and to allow an adjustment period of at least one month and then decide if this is the wrong choice. I have never understood the logic that a SCI patient is expected to be trached and cared for while PALS are expected to roll over and die.
You can read more about a tracheotomy at the following site: