One Hurdle at a Time

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One Hurdle at a Time

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CoD_fsfe_calendarIt's no surprise to anyone that Marc and I have been going through some major issues with our hospital and his doctors.

Marc has been doing pretty great in regards to his health. I consider it a success story at this point that his pain level is almost non-existent and there's been no major brain damage from the surgery that we've noticed. The surgery was intensive and they actually ended up removing small parts of his left frontal lobe. This is the area that controls our personalities so it was a HUGE deal going into this surgery knowing that it could potentially alter the person he was. However, he seems to be the same calm, goofy person he was before the surgery. I am thankful for this.

Yet, Marc is stressed and he's said this to me more than once. He doesn't like the communication issues that we are having with Stanford. He doesn't like that he has to listen to me fight with nurses, assistants, social workers and schedulers who can't seem to understand the concept of our circumstances which have been communicated numerous times over the last several months.

I cannot stand the communication issues either but I am working through them because I don't want to move Marc back to Arizona just yet. I want him to finish his IV therapy and I want to have a few months or at the very least, a few weeks of uncomplicated nights after the therapy has stopped. Target date for him to be off the IV therapy is January 13th. I know it can't come soon enough for the both of us.

I've become resigned to the fact that I'm going to have to figure out everything on my own. It's what I do. While it's exhausting it goes back to the saying, "If you want something done right then you have to do it yourself."

I am also upset that they keep scheduling appointments without consulting us and I get calls a couple days before when they are scheduled and I have to call and cancel them. They just don't get that I cannot just jump and run when they want to see him. They are not taking our needs and limitations into consideration. I had to finally tell scheduling to put a note in the system to DO NOT schedule any appointments without confirming it with me prior to. This made me even more upset because his Infectious Disease doctor sent us a letter saying they would drop him from clinic if we cancelled again without 48 hours notice and they are the main ones who are scheduling without consulting me. Let's just say, I had a few choice words for the doctor's assistant that does the scheduling.

We were FINALLY able to get three of the six appointment scheduled for this Friday. So, he will see Neurosurgery, Neurology and his ENT for the first time after the surgery. I am trying to make sure they also schedule the MRI for that day, as well. That one is still up in the air. And since I can only make the trek to see his doctors once a month right now because of financial restraints, his PCP, Infectious Disease and Allergist will have to see him in mid-January after he is finally off the IV therapy.

We're just focused on getting through the next three weeks of his IV therapy. After that then I will focus on the move back to Arizona and Mayo Clinic. Mayo Clinic is excited to have us back and I have to say, I am excited to be going back.

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Denise

I'm thinking of you and Marc, Casandra. I so hope all went okay on Thursday and Friday.

ejourneys

First, thank goodness Marc's pain is down and he's still himself. That is huge.\r\nI want to shake those schedulers by the scruffs of their necks. I wonder if a letter to the clinic, documenting incidents of unauthorized scheduling on such short notice and asking them to cease and desist, with copies to the Infectious Disease and other doctors, would at least stop the threats to drop you. (I'm a big fan of paper trails.)\r\n\r\nI hear you re wanting a cushion of time once IV therapy ends, as much as you want to return to the more competent and compassionate Mayo. I wish you and Marc had a transporter. :-)\r\n\r\nAm keeping my fingers crossed that you can shoehorn that MRI in. (((Hugs)))