Well I haven't written in a while, I haven't had much time since Hubby came home. I brought him home from hospital on March 27, 2015, he felt terrible and did not want to leave the hospital, a nurse told him to rest for a couple more hours and then leave, I was a bit shocked, it was about emtying the bed before the weekend.
I brought him home and we had friends coming to see him for the weekend, which was a help to me, they did the meals while I did nursing duties, changing ileostomy bags that just kept leaking, his out put was to high in which no one told us what was to much so he lost 2 more kilos, 13k all told. I was checking his blood pressure ever 2 hours as this was a good judge that he was dehydrating on me if it was below 100/60.
We have had a rough road with the bags trying out everything under the sun, after 4 weeks at home I thing we have one that works. We have also discovered its best to change it first thing in the morning after his shower and before he eats. So I have been doing this, hadn't change these since I was a PSW in my 20s.
It's been a learning curve for both of us, the greatest challenge now is to get more weight back on him so he can have the ileostomy reversed. He is now at 66 kilos and I can't seem to get him above that, his surgeon wanted him to be at 70 for his next surgery, but that is near impossible, the man is eating every 2 hours, donuts seem to help with thickening so we try to keep these on hand, the problem is that the ileostomy is at the end of the stomach and beginning of the bowel, so what ever he eats comes out faster than normal so by thickening it up our hope is that he is getting some nourishment, he has plenty of protein through out the day and truthfully if I ate what he is I would look like a sumo wrestler. He is slowing regaining strength and walking twice a day. Going for a test on Monday with the hope that there are no more leaks and he can have his reversal surgery sooner rather than later.
I have to say that we met some really great nurses during our time in hospital and we met some real assholes, those I will deal with eventually when he no longer has to go back into hospital. The good ones were so supportive knowing that I had no family there to talk to or get a reassuring hug from so they stepped in, they will be rewarded when he goes back in and in heaven for being so kind to their patients and family.
Here is a definition of an ileostomy.
An ileostomy is an opening in your belly wall that is made during surgery. An ileostomy is used to move waste out of the body when the colon or rectum is not working properly. The word "ileostomy" comes from the words "ileum" and "stoma." Your ileum is the lowest part of your small intestine.
I guess I should tell you how I have done through all this, has it been hard, you bet it has, the 5 days in ICU felt like a life time and so hard to see someone you love giving up, just wanting it to be all over, to watch this man waste away to nothing. But I had to keep up the brave face each and every day, not letting him see me cry as it would have only made it harder for him. Often the nurses would give me a hug and tell me to get a drink or take a walk just to clear my head. It's times like this that family support is everything, I need to thank my sister Linda French for the numerous calls and skype visits to check on us both. The online messages from family and friends and the calls and cards have helped so much, even family that was on vacation would email daily checking in. The family that visited when they could and made the long drives from Sydney and the Central Coast and Charlie's brother who has been a pillar of strength for us and Kerry who was there for me when I needed her.
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