This week has been a killer. I am being run to death and pulled in every direction. Bruce not being able to drive and needing to go to Dr. appointments, dialysis for 4.5 hours, picking up things from work on top of taking kids to schools and picking them up at different times, baseball practice, etc. etc. etc. is too much for me to do and try to work also. It's been a scheduling nightmare. Whatever it takes, I will not leave the doctor appointment on Monday unless he gives him permission to drive to work!
Bruce seems to be stronger and have a little more energy today so I hope that can last over the weekend. Yesterday he got a pain in his back - flank pain like where a kidney would be but since he has none, I thought it could be something to do with the nephrectomy surgery. Tonight the dialysis nurse said she thought it was scar tissue healing. He had to take pain medicine yesterday which he hasn't needed in a long time so I knew it was bad. Still hurts today but not as bad. He still has the all over aches that he has had since he got home from hospital. Dr. Russo mentioned that it could be because of the uremia. It seems that he is just not getting enough dialysis but I am wondering if this was happening before the seizure or is this just a set back from the seizure and hospital stay. The definition of uremic poisoning (link above) is exactly how he has been acting. I hope since today was an improvement that means the dialysis is doing a better job. They have started giving him some nutritional shakes this week also. The blood pressure is staying good and he is sleeping much better than before seizure. ~knock on wood~
We got the latest hospital bill. I don't want to dwell on the financial aspect of all of this or I will get crazy, but I found it very interesting to compare each of his hospital stays and their costs. This "seizure incident" was double the cost of the Nephrectomy surgery. One main reason was the amount of drugs given this time $34,812.00! When he had surgery it was $6878.00 including anesthesia. I thought the respiratory part would be high, but it wasn't at all. So there's something to think about in the big picture of what health care costs. The drugs costs more than the room charges or anything else.
Easter Everyday
8 years ago
Posts
Amy, I don't know if it's an option for you, but when I had my second nephrectomy and to get to and from dialysis and was unable to walk long distances, I qualified for handicapped service from the local transit authority. They would pick me up and take me to and from the center. A number of other patients used the service as well. The social worker at the dialysis center facilitated the arrangements. Good luck. Glad things are better.
ReplyDeleteThe service the above post alludes to is the one I mentioned previously that many counties provide for the handicapped. They come right to your door. Much of this kind of stuff should have been addressed by whomever the hospital designates to do what is called "discharge planning" before a pt goes home. Do you not have a social worker who assists you with these and other issues??
ReplyDeleteThe flank pain could be many things including an abscess, adhesions, etc. Pain is a sign that should not be ignored nor just "medicated away" without determining the cause. It is our early warning system.
You will ultimately be better served by demanding the help from social services to get the transportation needs met than by allowing Bruce to drive too soon considering some of the issues he has had. Can't the church get a list of volunteers who could give one trip a week to help out and set up a schedule? Again social services should be helping with these issues.
Lastly, is Bruce having any other symptoms with the flank pain? like a fever or sweating? All symptoms are clues that help put the puzzle together and get an answer.
Doesn't Bruce have co-workers who would be willing to give him rides to & from work? They could take turns & divide the days among themselves. Do they know he needs this help? They would probably be more than willing to help out. Also, could you ask one of the parents of a classmate in your boys' classes to help with rides home? It wouldn't have to be everyday, but from time to time on your most hectic days. Put some pressure on your social worker to help with transportation to the Dialysis center.
ReplyDeleteWe will see what tomorrow brings. I am hopeful it will work out. The social worker said there is no service to drive him that late at night and we can't get his time switched now.
ReplyDeleteI don't know anyone to pick up Beck because all of his friends ride buses or bikes home. And I need him to come home and get homework done instead of going to play somewhere because he has baseball from 6:30-8:30.
The main issue will be work and I hope we can get people to take him to work and drive him to dialysis or home. But the late night pick up at dialysis is my main problem. My parents are helping out with that but it falls on baseball nights and we can't keep this up long term.
Amy, how late is Bruce's evening dialysis appt? How far is it from home? Is it every night or just two nights or is it three times a week? Try getting the schedule out to some service organizations or even your church men's group. Does Beck live too close to school to qualify for riding the bus?? With the possibility of a transplant looking better, maybe the worse case scenario to get through this rough patch is that Beck may miss one season of baseball. I know you do your best to shield the kids, but sometimes even the youngest have to give up things in hard times.
ReplyDeletePerhaps Bruce could ask thr nurses at the dialysis center if anyone of them live near your area. If so, maybe they would be willing to drop him off on their way home. Or, maybe another patient who is on the same schedule could drop him off. Just a thought!
ReplyDeleteCould you ask one of your next door neighbors to come over when you go to pick Bruce up at 9:30? The kids would probably be in bed & the nighbor would just have to sit & watch TV & wait for you to run & get him.
ReplyDeleteThe irony of the drug costs is that we use many of the same drugs (propofol, fentanyl, morphine, hydromorphone, diazepam, midazolam, cefazolin, ampicillin, lidocaine, bupivicaine; any of these sound familiar?)--AND we don't get volume discounts like hospitals do--and you would be horrified at how cheap most of them are, like in many cases under $10 per 10 or 20 mL bottle). I hope health care reform deals a little with the appalling markups, it makes me angry to even think about it.
ReplyDeleteHope you can find a solution to the taxi service issue!