Neck Trouble Continues

In October 2015, I was able to do something I never thought would be possible. After five years of using the diaphragm pacemaker and not needing a regular ventilator, I got rid of my regular trach and replaced it with a trach button. I loved the feeling of not having trach ties around my neck and the pain I was getting from the trach rubbing my throat.

It has been seven years since that change and it has gone very well. Several months after getting the button, I discovered it was very hard to remove and would likely need to be yanked out. However, I hoped that wouldn't need to happen for many years to come. Unfortunately, it looks like my time will be up this coming Tuesday.

All summer, I have had a lot of trouble with drainage coming from the button. I have been using a tissue under my shirts to try and keep them clean, otherwise I go through 2-3 shirts per day due to my neck. My doctor tried burning off granulation tissue twice with a chemical called silver nitrite and once with a laser. We also did two rounds of oral antibiotics, but none of the attempts made any lasting impact.

Therefore, he is now going to try to remove my trach button and put in a new one that I have for backup. If something doesn't go right, then my doctor will put a regular trach in to hopefully allow for healing. An added complication is that the company who made my button stopped producing them a couple years after I got mine. Therefore, I can't get any new ones and can only try what I have on hand.

The doctor gave me the option of going to an operating room to change the button, but that adds further logistical problems. Instead, I will be fully awake with full feeling for the procedure. To say the least, I'm not looking forward to this appointment. However, something needs to be done to try to stop the drainage.

I'm praying I will not need to go back to the regular trach again. Part of the problem I was having in 2015 is that it was starting to rub a hole in my throat due to being flat so much. I am still doing the flat routine and obviously do not want to have holes in my airway. I've heard of other quads that have had this rubbing and it pokes a hole in a major artery and they bleed to death in under a minute.

Such is the quad life sometimes, but I'm thankful for the years I have been able to be free of a trach. Whatever happens, I know God is in control and I will continue to look to Him in all circumstances.