Fasten your seatbelts….it’s going to be a bumpy ride.
My, my so much has happened since last I posted.
Rich was discharged on Dec 30th. That was fun, but why rehash the discharge practices of a major medical center. I’m trying not to be redundant. Per usual, we received discharge papers at 1:40 pm and told visiting nurse would be at our house at 2:30 to set up his IV. Apparently hospital staff think we are the Jetsons. It is not physically possible from announcement of discharge to ETA at home in that amount of time when drive time alone is 45 minutes. Explaining that was like spitting in the wind.
He came home with a huge box containing two pumps and all manner of accouterments. Visiting nurse waited patiently in our driveway. AND. They sent the one RN in their crew with no experience with this equipment. She was amazing and we managed to get it done.
Continuing with two hour blood sugars. By 10:30 pm Jan 1st, we were on the phone for the third time with Dr Endo and the decision was made to send him back to the hospital. To give you an idea of how this is going, I decided I could no longer manage alone and phoned a friend. FRIENDS got us to the ER where upon arrival, and announcing the patient’s name, the response was, “Yes, Mrs, _________, his room is ready—5419.”
Got him settled in and Christy and Denny took me back to their house. I think they were afraid to leave me alone, and I wasn’t even twitching.
Then I got a hellatious cold which meant I could still got to work (that’s where I got it from patients who cover their cough everywhere except in a doctor’s office. ) Trying to be responsible I avoided trips to the hospital’s oncology floor. In this mix I went forward with set plans to remove all the carpeting in the bedroom because there is nothing that removes bile stains from carpeting, and I wanted to make the bedroom a total Zen area for Rich. He has refused to sleep in the bedroom since the last EMS visit.
Friday, I get a call that they’re sending him home. REALLY?! Really.
Back the bus up, Jane…. Not only is the house in total chaos from the remodel so that he will once again find sanctuary in his bed, I have made the supreme decision to unleash the hounds. I have finally accepted the offer of a friend, who just happens to be an attorney, to take over all manner of dealings with these People, because I am just the wife and I’m getting no where fast. She has spent all morning trying to get things going (wait for it) and everything hinges on him being under their roof. Rich, who is sleep-deprived and on insulin overdose from his tumors trumps us all and demands to be released despite my pleadings that we need more time to push the insurance company and our only leverage is him being in the hospital.
I began to melt. Just like the Wicked Witch of the West. Only I did a whole lot more raging against the dying of the light. No one around me could understand the level of my frustration and anger. Why? Because unlike me, they have not lived and worked in this environment for lo these many years. I know these bastards and I know the game. It boiled down to this….once discharged, he is no longer their problem and I no longer have any leverage to get anything done. Trust me. There’s more.
On Dec 29th we met with the Radiologist, discussed and agreed to the placement of radio-active pellets to be placed in his liver tumors to stop the flood of insulin. The hold up? Insurance approval. As long as he’s IN the hospital, the charges for that are an incentive for them to approve this procedure. Once home….. we’re fucked. Now they can delay and delay in the hopes that he’ll just die and stop bleeding their coffers.
Now he’s home on a whole new regimen of portable IV infusion. Well, skippity-doo-dah. (one out every pre-loaded lines leaks—so he had a neighbor drive him up to the fire station to check the IV) He’s still checking his blood sugar every two hours. Ergo, still sleep deprived. And when the pump alarms at one AM, it’s MY problem. In short, he’s no better off being home, he’s just not their problem anymore.
Check your watches. We agreed to the pellets on Dec 29th. Yesterday, on Jan 13th, I learn that the radiology dept did not fax anything until Jan 10th ; our insurance company has received NOTHING.
My friend/attorney is now in contention for the Guiness World Record for number of times you can be transferred to another person during ONE phone call. No one knows anything, no one can help her, but they sure as hell can transfer her call to someone else. On the UP side, she can now vindicate my witchy melt down on Jan 6th.
Wait. It gets better.
Thursday Rich had to see his cardiologist. Because all this insulin overload has caused his heart rate to hover in the 150/minute range. Dr Cardio decided that he needs to be on this BRAND NEW anti-coagulation med. Hold the phone, honey. A drug rep for that exact med happened to be in our office and I asked a ton of questions and it is way too new to introduce to Rich’s panacea of pharmaceuticals. I relay this info to Rich as objectively as I can and HE decides he wants no part of anything that his Dr Endo does not approve. He tells the doctor this at his appointment on Thursday. Friday (yesterday) at 16:45 Dr Cardio’s nurse calls him to let him know that they couldn’t reach the endo doctor, the Rx has been called to the pharmacy and he has to start it that night and on Tuesday Dr Cardio will do a cardio version of his heart.
I’m thinking ya’ll can guess my response. Say it with me….. “Fuck you.”
I just looked at Rich. Finally I asked him, “So how does it feel to have a doctor ignore you?” I also told him that if he wants to trust the cardio doctor coming late to the party and start this med it’s his decision. He called Dr Cardio and twenty minutes later got a return call from the doctor on call. After explaining his concerns, the doctor assured him that it was not a problem as long as his kidney function was good. Rich pointed out to him that his latest information is that his kidney function is not good. … on hold…. Doctor comes back and agrees that it’s best to hold off on this new Rx….. blah, blah, blah.
Here’s a clue. If you fucking assholes would get the paperwork to the insurance company so that Rich could have the pellets that will shut down the tumors flooding his system with insulin….. umh…. Maybe his heart rate would correct itself. A cardio conversion of the heart is like putting a bandaid on a gushing wound.
I have now decided that I need to go BACK and get my RN. Because I want a job as a Patient Liason, or Case Manager. I ,and my friend/attorney, have been dealing with both. And the reason I want that job is because apparently you don’t have to do SHIT!. We have asked everyone with this title to explain their role in this, and their role is to deal with patient’s concerns. And the manner in which they DEAL with patients;’ concerns is to patiently listen and then say, “I understand. That must be really frustrating for you.” They CANNOT however, direct you to anyone with the power to address those concerns in any manner that even hints at resolution. I could do that job. For about three days. That’s about the time my Bullshit Meter would redline and I would lose that job by the end of the week. But whoo-hoo!, I’d be an RN!
Today I’m trying to move forward. I am living on Faith. For me it is not a concept, it is what I live, breathe and eat. Then, if I’m lucky, my GI tract eliminates.
I go to work. Not because I’m a greedy bitch, but because I have made a commitment to my patients , my employer and my co-workers. My repeated or extended absences places a burden on all of them. Yet I could give up everything NOW if it would make any part of Rich’s life easier. I cannot explain how deeply he loves this home we have created and how critical it is to his strength and healing. I have accepted every bit of help that was offered and that Rich felt comfortable receiving. I could live in a cardboard box with this man and slip easily into eternal sleep with him. I continue to fight and struggle because Rich continues in a belief and desire to live. I will back his play with everything in me. I’m on his Six. And not heaven or earth shall move me from that position.
