Hello - My mother has been ill for a year now with abscesses in her abdomen. It started with a bout of diverticulitis that ruptured the colon that resulted in a fistula to the skin surface. She has had 5 surgeries with two different surgeons trying to clear up the internal pockets that would not heal. They kept rupturing up to the surface with fluids. She has even had a wound vac. Her primary has said all along he thinks it still has to do with the colon. The last surgery she had was with surgeon number 2 and he thought it best to operate by fully opening it, cleaning it and sewing it all up. Sure enough one month later, last Saturday she ended up in the ICU with a severe infection the size of a grapefruit in her abdomen almost septic. Sooo, with yet another admission through the ER surgeon number 3 opened it, cleaned it up and put in a drain. He told us he thinks it has to do with the sigmoid colon and that part may need to be removed. That was the last we heard 3 days ago after he did the cleanup surgery. She is now in med-surg in the hospital and they are talking about moving her out to a rehab facility (for the second time). WE STILL don't even know what is going on, or why this keeps happening 5 surgeries later. They keep doing the same thing over and over and getting the same results. All these surgeons know each other and are somewhat connected thru the network or personal relationships. I need some advise as to how to get to the bottom of all of this. We are not even sure who's care she is under anymore. All of this is complicated by the fact that she now has a second bout with CDiff (from the antibiotics from the surgery last month) and is diabetic. Who do we look to as the doc who is watching the bottom line? Now, in the hospital she is under the Hospitlaist Doc. If she goes to rehab she will be under the rehab doc. Who is watching the big picture and making recommendations to heal her? We need somebody that will look at all the pieces and take some charge here. Is there somebody at Medicare we can contact that will help? What if we want to take her into one of the big hospitals in Boston rather than these suburb hospitals? How do you start that? She is the sickest I have ever seen her right now and all we are hearing is that she is off to rehab without any plan!! Please, any help from anybody who has navigated something similar would be helpful and appreciated. Thank you in advance. Michelle
Getting mom to a major center is Boston is an excellent idea where she will have the benefit of a team of specialists to oversee her care. They may want to do major surgery so be prepared for the complications and the possibility of a colostomy. Prepare yourself for a poor prognosis, as you are aware,your mother has a very severe condition. Blessings
As for getting your mom transferred to another hospital, we presented this option when we went to patient relations and we were told that we were certainly free to do so but it would have to be out of pocket and the hospital would not provide an ambulance to another hospital. My dad was in no shape for a car ride so we nixed that idea and settled for dealing with what we had.
You can refuse her discharge to rehab but this is just a stop-gap measure because the Dr.'s will do what they want to do. And again, we did this with my dad. They were going to discharge him less than 8 hours after a fall in which he hit his head and sustained a black eye. I wanted him observed for at least 24 hours so the hospital relented and let him stay but I still felt that I was at the mercy of something much greater than myself that I could not fight (the hospital). I felt that I had very little recourse.
A rehab doc is barely involved with the care of his/her patients. They're hardly ever on the premises! They're there to sign charts and do what the nurses suggest and to satisfy insurance mandates. They spend hardly any time with their 'patients' and you certainly never see them walking around so it's next to impossible to confer with a rehab Dr. (same goes for a nursing home doc). If you have questions or concerns you have to alert the nurse who puts a note in the chart and it may or may not ever be addressed and if it is it's not in a timely fashion.
I would say based on what you've shared that as of right now she is being cared for by the hospitalist. I would take all of your concerns to this person. I used to get up to the hospital by 7:30 a.m. just to wait for the hospitalist so I could speak to her about my dad's care and overall health. And the last surgeon your mother had would be the surgeon that has her case now and this person should be checking on her everyday. I've had many surgeries and the surgeons always popped in on a daily basis post-surgery to see how I was doing.
Are all the Dr.'s on board with the diverticulosis diagnosis? If so have the hospitalist explain this to you. You've got a great grasp of what they've been doing to alleviate these issues surgically, now find out what's ahead. Will she need to be on new meds? Will she need to be seen regularly by a gastro-doc? How long are they going to observe her after this last surgery before they ship her off to rehab and what if the same thing happens again? Will the rehab have her transported by ambulance to the same hospital or will you have the option of going to another hospital? Since she's had post-surgical issues in the past will the rehab staff be keeping a close eye on her? And with her C-diff and going to the rehab will she just be shut up in isolation once she gets there? If you can choose and you choose another hospital don't be too concerned about your mom's continuity of care. With computers the hospitals can send charts to another hospital very easily.