I don’t have the time to do a detailed entry today. Yesterday, I began trying do some work from home for the company I work for. A co-worker sent me a nice email and below is basically what I replied back to him. Most of it is probably a rehash of things already mentioned, but I did go into some of the problems I’ve encountered along the way with various health care organizations. Thankfully, the Hopsice situation was resolved and a compassionate nurse is now helping out.
This has been a very long couple of weeks. I haven’t slept more than 2 hours straight since the Wednesday before last. Since the Thursday before last it has been a constant treadmill, although it has gotten better the last few days, which is why I am now able to do something to help out.
We had absolutely no guidance from the hospital, oxygen place, respirator company, and even Hospice in the beginning. I spent the first 5 days with him at home just trying to keep him alive. A lady came over on Sunday to show me how to give the i.v. It was merely a rushed stop for her on the way to UMBC to see her daughter. I asked her about the breathing therapy and she said ‘That’s not my area.’. I asked if she could check and have someone contact me. I’m still waiting for that call.
On Sun night the oxygen maker blew up. I switched him to a portable floor tank and called for assistance. Naturally, they beeped someone that wasn’t from around here to call me. Then that person ‘told me to call’. I gave him a piece of my mind and finally someone from around here called and said they’d be out by 10 AM. I told them to bring big floor units, that he was in bad shape and I didn’t want a circus switching out everything and moving him.
Naturally, at 11 AM the next morning I had to call again. They finally showed up with another floor unit. We had to move things around and he was in rough shape at the time.
When I talked to the guy in the middle of the night and explained what happened I told him that the defective oxygen making machine that broke was set on level 5. I asked him what level I should put the floor tank on as it was a different unit. He said a 5 on the one was a 2 on the other.
The guy the next morning said it should have stayed on a 5.
I called to try and get someone come out to give me a demostration on the breathing machine. They said they didn’t do that and told me to read the instructions. I couldn’t even read and understand the headline from a newspaper about then. Finally, I force myself to concentrate on everything and figured it out. They couldn’t care less.
Then to top it off Hopkins doctor and social worker said Hospice wouldn’t come in to help if he was receiving any sort of i.v. Finally my Dad said to stop the i.v. and we called Hospice in. The California Valley Girl arrived. Nora met her at the door and told her to be very quiet. She came bouncing in like she was going to a dance. She said he could receive i.v. treatment.
Then she starts giving us a list of numbers to call. My father was alert and taking part in the conversation. She said,
“Here is the number to call after hours when he dies. I had a patient expire the night before last at midnight and they didn’t call the regular number until 7 AM. By the time I got there the body was cold and stiff.”
That was the exact words. I almost through her out of the window. I thought I must have heard her wrong, but I asked Nora and my aunt later what she said and they repeated it exactly.
Nora called Hospice the next day and told them if she was the best thing they could send, we’d handle everything ourselves.
Finally on Friday we got a different hospice nurse who has been helpful. A lady came out to clean him and show us what to do. Both come 3 times a week.
My father said to start giving him the i.v. again. Yesterday blood started backing up into the tubing with both i.v. bags. Today I’ll have to sit right next to him and keep an eye on him. The nurse said this sometimes happens and it isn’t a big concern right now. His pic line in his arm might be failing.
His voice is very weak and he is starting to have a difficult time in helping us move him. Nora went back to work yesterday and it’s just me and my mom her most of the time, although he has had vistiors every day.
He wants to go quickly. I don’t know how much longer he can hold on, but I’m doing everything I can to make him comfortable. I sleep right next to him and wake up every time he makes a noise.
I got to run to give him another treatment for a few minutes. I’ll be away from the computer today from about noon until 2 as I have to stay with the i.v. from now on.
Please feel free to pass this on to everyone in mis.
I try to do a blog posting every day as I get so many emails from around the world from readers of the blog. Everyone says the same thing you do about it.
Thanks for everything.