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.
No comments:
Post a Comment