HOSPICE

May 2011 5 months after definitive diagnosis read on... how did we get to the point where Don is under the hospice wings of care? I cannot remember how this happened I just know that one day hospice came to our home after  Don's peg tube surgery and a lovely nurse named Michelle came to see us and her natural nursing instincts told her there was a need and so she made sure Don was going to be looked out for. After Michelle talked with us she said "I want to talk to the director of Hospice care here in Keene NH and tell him about your case", the director found out how fast Don's ALS was moving and made a decision to book Don into the loving care of Hospice, does this mean Don will die soon? NO it does not, what it means is that we have SUPPORT for a terminal illness and now that Don is under the hospice wings of love if he needs them they will be there for him 24/7, what an amazing supportive team of people the hospice nurses are, we are thankful for them and their wise wisdom.

THE CANE

ALS moves into your life like a stealth bomber lurking over it's target waiting to seek and destroy. Don was given a cane by the VA to help him get up and around in the morning, he gladly took the Cane home with him but it sat up against a wall for the first few days. I initially could not see the significance of this piece of curved metal but to Don it was eating away at his mind. then one morning he started to use the cane and to my surprise was walking around the house with it for almost a whole day, that same evening he called to me and looked me straight in my eyes and said " I hate this cane!, this cane makes me realise I am truly unwell, this cane represents what ALS is doing to my body", it was then that Don realised and understood and accepted he has ALS and that he is in a battle for his very life.

Mary Jane & ALS

I have always been a believer in mother nature's bounty of healing plants, after all she has offered us morphine from the opium poppy to kill pain, Aloe Vera to sooth and heal cuts and burns & Aspirin from the bark of the white willow the list is bountiful and endless. With the above concept I decided to research the Internet for natural herbs for ALS and Marijuana came up immediately! I have found some interesting information and decided why not share this, here is a video of an ALS patient who swears smoking marijuana slowed down the progression of her ALS, I also found this very interesting article on ALS (Amyotrophic lateral sclerosis) and Marijuana you can read it here:http://norml.org/index.cfm?Group_ID=7004.

As I see it ALS has been medically documented for 140 years and the medical field still has not come up with any form of useful therapies so when it come to ALS we all need to keep an open mind and always remain aware of  scammers, If anyone else has found other useful information on ALS and using marijuana please do not hesitate to leave feedback,

AVAP BIPAP

Well it was back to the drawing board for fitting Don's breathing machine and after just getting over surgery for his peg tube he had to go back to hospital to stay over night to be fitted for a AVAP BIPAP as the one he was using was not doing the job, actually due to his throat closing the bipap he was using was making him feel like he was being choked, NOT GOOD.


So he came home with a new breathing machine and even though better than the other one the two masks provided still feel like they do not fit well but Don is using it at least 4 hours a night and that is way better than his usage with his last machine, his new nickname is "DARTH VADER" !


I think we will have to call the avap support and get this darn machine figured out.

PEG TUBE UPDATE

WE HAD MOVED HOUSE 3 DAYS BEFORE DON'S PEG TUBE SURGERY APRIL 25TH AND DON HAD OFFICIALLY STOPPED WORK FOR GOOD APRIL 24TH, such big changes in our lives he handled surgery very well, sadly the hospital did not. The procedure is normally a daytime event, but due to Don's bulbar onset the neurology unit had wanted him to stay overnight and see his clinical team the next day, however even though this had been ordered this never happened and he was sent home as soon as the conscious sedation wore off, no visual instructions on how to care or feed with this tube, nada zilch zippo. This error sent feathers flying in all directions when the neurology nurse called me the next day asking where we were and when I replied we are at home she was furious, it was only then that we realized he should never have been sent home.

When Don left the hospital the very first thing he did when he got in the door was eat a ham sandwich as he had not had anything to eat or drink since the night before and was fit to be tied, I was secretly worried something would go horribly amiss as he had this tube hanging out of his belly and there he was stuffing his face!! but he handled the solid food OK.

Next day with the help of a home visiting nurse he had his first peg feed, we did this feed by a large syringe pouring bottled water in his tube first then clamping, then pouring a liquid food supplement in then clamping again, then bottled water again and he handled this all very well, the wound site was still very bloody so the nurse showed us how to clean the site & correctly turn the tube.

DAY 3 and the wound still looks bloody & Don has decided sitting in the lazy boy is not enough of a 45 degree angle for feeding so he tried laying on the bed against his wedged pillows & this seems to stop flux feeling up to his throat. DAY 4 wound still bloody but he feels less uncomfortable and has started to master his feeds no problem. DAY 5 6 7 less bloody around the wound and it is starting to feel itchy but now the biggest issue seems to be motivating Don to do this process 4 times a day so I suggest we utilize the drip pole and use the drip bags given to us by the VA so he is able to feed slower as with the drip you can control the flow much easier. So I set up the drip pole and drip bag ( remember I am NOT A NURSE) and proceed to attach the tubing for his feed and nothing happens, there is supplement spurting out all over the place as we drastically try to figure out why it is not working and then AH HA Don has not released the main clamp from his tube so all of the feed was being blocked PROBLEM SOLVED.

MAY 11th Don is not good at keeping up his feeding schedule and so far he is feeding only 2 times a day, but the wound looks great and is healing nicely his weight continues to fall and I hope he will eventually grasp the importance of feeding 4 times a day as the weight gain will help his lungs, it is all a huge adjustment for him mentally and physically, he should have his peg tube flashed to his skin in about 6 weeks time.

FOOTNOTE: the hospital never shaved Don's belly before surgery & this made taping the tube after each feed very uncomfortable, so if you are going to have this procedure and you are a guy MAKE SURE THE SITE IS SHAVED BEFORE HAND.