Peg tube to a Mickey tube

Don's New Mickey Tube 7/22/11 

Last week Don went to the VA spinal clinic for his check up and to finally get his peg tube changed to a mickey tube. He was excited about this because getting the mickey would give him more dignity, no more huge bump sticking out from under his clothes, and no more shaving his belly so he could tape the tubing to his belly, no more skin infections or oozing ( his tube did this constantly) but the change came at a price.

Don's peg tube change was without full sedation, conscious sedation, or pain killers, he had his pegtube yanked out of his belly and "IT HURT"!! not to mention he did not like seeing any blood, Don almost told them to stop!!!!He has bulbar ALS so they do not like to sedate bulbar patients at any time unless needed. He will have to have his mickey replaced in 6 months.

UPDATE DEC 15TH 2011 Don has had ongoing problems with his mickey, it started off with secretions leaking around the tube, hospice gave him a medication to lower the acid level in his stomach content & this seems to haved helped for some time. Then he developed constant bleeding around his mickey and this has continued the whole time, last sunday it was bleeding enough for me to call a nurse to come and see him, the outcome is his mickey will have to be renewed, his body is trying to constantly reject & grow new skin around the mickey.

UPDATE DEC 19th 2011 well the veterans hospital is trying to fit him in to have his mickey tube changed as the leaking is still happening.

UPDATE: Mickey tube changed just before xmas!
Mickey tube changed thank the good lord above, this is Don's third tube, his new tube still secrets discharge around the outside of the mickey, we have learned to cope with it, according to the nurses ongoing discharge around the tube is standard but I know other ALS patients who have no discharge!

Sleep Lab For Bipap

This past wednesday March 23rd Don went to DHMC for a sleep study to find out what kind of Bipap breathing aid would be best for his breathing issues. Don arrived about 7pm and by 9pm he was fitted with all the necessary wires and gadgets ( they had also threatened to shave his goatee off which he has had for years ) after a while they put a mask on him and he found this very uncomfortable, he felt like he was being affixiated so they had to remove the mask. he ended up with about two hours sleep but it was enough to figure out what his breathing issues are ( I hope). Don was told in the morning that they would see him and address the Bipap issue at his next ALS clinic, however the hospital has since called & informed him that he has a date for his feeding tube proceedure April the 25th,  not sure now what will happen, either the Bipap will come first or the feeding Tube surgery, either way something has to be done about both.

PEG TUBE DECISION

Don went for his first visit with the speech & diet therapists, the subject of "peg tube" came up, I saw the shock on Don's face as this was the last thing he thought would be discussed at this appointment.
They explained to Don that keeping his weight up was one of the most important things in fighting his ALS because the weight would also help with his lung function. They told him to think about it and that they liked to peg tube patients earlier whilst healthy enough to handle general anesthesia.
I could see the sadness & fear in his eyes talking about the peg tube as it brings the reality of what is ahead, I asked what the process was and they said he would be in hospital at least one night, he would have a longer tube for approx 8 weeks then they would turn it into a button tube so he did not have a dangling tube, he would also be able to work having this and that it was vital for giving him the nutrients he needs on a daily basis.
Don must eat eat eat he can have the most of unhealthy foods like ice cream fatty foods anything that keeps the weight up, anything you ate whilst on a diet must be completely reversed. WE WILL UPDATE YOU......