Welcome

This blog is about a new walk with my husband Rick & I since he was diagnosed with ALS (Amyotrophic Lateral Sclerosis) or Lou Gehrig's Disease or MND (Motor Neuron Disease) on February 1, 2008.

This blog was started as a way to keep our family and friends and anyone else interested in our battle with ALS updated.
So as you read this blog please keep us in your hearts and prayers.

The blog starts from the most current to the oldest entry. Rick has started to blog now also as of April 1,2008 so this site has become officially "our blog".

My dearest husband Rick passed away on August 13, 2010,
2 1/2 yrs after diagnosis. Now I have to learn how to walk in the courage, strength and bravery that he did in fighting this disease. He promised me he would be waiting for me in eternity on a park bench. Together Forever!

Thursday, November 12, 2009

Rick here..."A new Pegger perspective and I don't mean WinniPEG"

A little info on the "PEG surgery"... (Percutaneous Endoscopic Gastrostomy) that I just had. From a "pegger's perspective".

Well, it was quite a rush. I was on a waiting list for the first available spot they could fit me in for my peg tube. It finally got done last Friday. This is how my process worked.

I was wheeled into the operating room. The procedure is done with your head and chest elevated about 30 degrees. The first thing they did was spray the back of my throat and mouth with a freezing agent. They then tied my hands to the side of the stretcher...I suggested that they must have not wanted my help! lol They then put a plastic mouth piece with a hole in the centre of it in my mouth to clamp down on.

You then get a little shot of happy juice---not enough to put you right out but rather to fog you up real good. A camera is then inserted down your throat into your stomach via your mouth. It is a pretty weird feeling as you are trying to breath and gag at the same time. It goes surprisingly well though and there was no sense of panic at all!

The doctor scopes out the stomach with the camera then they dim the lights in the room and shine a very bright light out the camera end. It is maneuvered around so that the light shines out the front of your belly. A small incision is made and they reach in and pull out the plastic tube that they have fed down the camera cable. The tube is about the size of a gas line.

They secure the line from the inside and outside with a couple of plastic fittings called "bolsters". Really a glorified plastic washer. That is all that there is to it. The whole thing took about 20 minutes. Once the op was done they put on my bipap and up I went back to my room.

After the operation:
Now for the fun part...getting emotionally and psychologically used to the darn thing! It sticks out of my stomach about 6" above my navel and is a foot long with a two headed plastic adapter at the end for feeding and flushing! Not as scary as that seems! Check photos on previous blog entry for the photo shoot. lol

They run water to flush the lines to make sure everything is okay for the first time. As I watched the very first injecting of fluid it was pretty strange. There is no sensation when being fed through the tube. I watched the liquid go in and waited. Nothing happened...no pain...no sensation...kinda anti climatic actually!

I can still eat and drink as usual. We use the tube feed each evening to top up my calories for the day. Later on when my swallowing is more affected this will be the only way that I will be able to take nourishment, fluid and of course meds. The reason for the rush in getting my tube was because my breathing has gotten so much worse. Once your breathing deteriorates to a certain point it is not safe to operate on you so we wanted to get this behind us.

The big part of the peg is the work involved for your loved one to do the feeding and clean up of equipment afterwards. Joan has mastered it through much fear and trembling of the unknown. She was so scared of letting in air into my belly. It doesn't work that way what you have to be careful of is stomach contents slipping back out the tube. A tip: Remember to bend the tube when inserting or removing the feeding tube line! Ask us how come we know???? lol