Navigating a Medical Crisis — Part 2 — FUBAR and Lessons Learned

Photo by rawpixel on Unsplash

We are several days into the hospital stay, but all the endocrinology issues started several days before surgery.

Bring the pump, leave it at home,

drip system throughout the stay,

set the pump for specific levels during surgery…oy.

We go with what the surgeon’s nurse says — leave the pump at home. So the first day in ICU we meet with one of the nurse practitioners who is covering. We finally come to agreement on his insulin doses: because of his appetite issues, he can’t always eat enough to cover the insulin and carbs he plans on — so we insist — and she agrees — to let us determine the dosage and the nurse will order that amount.

This works fine until hubby is on the regular nursing floor -Shephardson 3 — AMAZING nurses!! We get a visit from an endocrinologist who isn’t even aware hubby has had a stroke, and yet this doctor wants to change everything about his dosages. He refuses to listen to what we have been doing and goes ahead and makes his changes in the computer. Fortunately what he changed didn’t affect his meal bolus, so we were okay for a bit. Then he starts talking about us no longer doing shots, no more pump…and doesn’t explain any of that to us…it’s not like you all of a sudden get better from diabetes and no longer need insulin.

He keeps showing up, telling us what will happen. He insists on me bringing in hubby’s pump so that he can make the changes. I tell him I’m capable of making the changes, and if I have problems there is an 800 number that is great to use. (Keep in mind the previous endocrinologist we have been seeing yells at us during each visit because no one in the office can download his meter readings, so he can’t do anything…even though we always show up with our own printouts of glucose readings.) At this point I complained to the diabetes educator (who was supposed to call four months ago to schedule us) who was now calling to schedule an appointment the following week to look at a CGM (Continuous Glucose Monitor). This is where Mama Bear kicks in big time — what the hell is a CGM, he’s still in the hospital, whatever are you talking about?)

He insists I bring the pump in or he will refuse to agree to discharge, since too many patients don’t make the changes that are suggested. I want to know what changes he wants to make, and he insists I bring the pump in so he will do it correctly.

He shakes my husband’s hand and ignores me as he leaves. I bring the pump the next day, along with the manual. He spends 45 minutes on the 800 number with a newbie who has no clue about pump settings, so the doctor explains to him how they work. (Good use of doctor time — snort)

THEN we start the final prep for discharge.

Cardiologist comes in, asks “how do you feel about amlopidine?” Did you look at the chart? He’s allergic.

Neurologist comes in, “We’re going to start you tomorrow on coumadin.” That’s not what the cardiologist said, so the neurologist leaves to make a phone call and comes back and says “Okay, start in two weeks.”

The case worker was supposed to be in the previous day and take care of scheduling all our upcoming appointments. She didn’t — just called Visiting Nurse Association to tell them doctors would be sending orders…and the pharmacies are closed for Thanksgiving.

The saga continues as hubby’s glucose readings go through the roof within 24 hours of being home. As I look at the pump settings, the *$&#^%@* set the readings ALL to half the basic dosages. I call the after-hours endo number and get the on-call doctor who figured the dosages were lowered to be more in line with what he was getting in the hospital.

AHHHHH….prednisone. Don’t you read the records?

We are still finding out how much prednisone screws with just about every system in the body. We are still four weeks away from being off the stuff — got to cut down very gradually. So his vision is blurry, he can’t hear out of one ear, his sugars are all in the 300s, his appetite is still off, and his upper BP number is in the 200s — so he can’t start cardiac rehab as scheduled.

Oy — so many doctor appointments the first two weeks he’s home — supposed to be home-bound, not going out for kidney issues, CT scans for the stroke (had to do it a specific day, regardless of whether he was up to it, as the neurologist had to have it two days later…and neuro told us as he walked in to that appointment he really didn’t know why we were there, he didn’t have much to tell us).

All we need is for someone to explain the why’s and wherefore’s of meds and procedures to us.

I do not think that is too much to ask. All the other endocrinologists that we have started to see excuse this one because he is from a Latin American country where the doctor gives the orders and patients obey. I would imagine he will get a lot of complaints. (That’s it — it’s down on paper, and I promised hubby I would no longer bring him up, that I would move toward compassion and let it go…which is very hard when it’s your loved one.)

Lessons Learned:

Photo by Chang Duong on Unsplash
  1. Nurses are amazing. They have a wealth of knowledge and they are willing to share. They work long shifts and always have a smile on their faces.
  2. Be nice to the nurses! We’ve had some obnoxious patients sharing rooms with us, and they are miserable to the nurses. Yes, we’re sick and worried, but nurses are trying to help. It’s amazing the little extras you get with being nice — quicker with the ice water, liquid Tylenol if you’re having trouble swallowing pills, the sponge baths, simple chats. They want you to get well — don’t make it tough on them.
  3. You have to advocate for yourself or have someone you trust with you to do that. When you are dealing with five different medical specialists, something will slip through the cracks — invariably. I had to keep track of everything and correct/comment/question on a fairly regular basis. Obviously I’m not afraid to do that and use the terminology. Imagine those patients who aren’t able to do that.
  4. ASK QUESTIONS! Make sure you understand why something is being done, side effects of medicines, how often you need to take doses. What has always worked for me (after many years of working with teenagers) is to ask a question in a particular way: I’m curious as to what you think about possible side effects; what are your estimates as to how long something will take? Phrasing is key to getting what you want — especially if the other person realizes you are working with him/her. Call your primary care doctor if you think something needs to be done or you need explanations of test results. Encourage your doctor/s to read all the notes left by previous care-givers, doctor or nurse. Ask them if they saw the notes from so-and-so and what they thought of the medicine, suggestion, appointment, procedure. Don’t be afraid to ask so important issues don’t fall through the cracks.
  5. Visiting Nurse Association in Chittenden County, Vermont is FABULOUS! Had great home care, answered lots of questions, occupational therapist was very helpful with information about what it really means to “rest.” A HUGE shout-out to Doug, the speech-language therapist who was amazing with my husband. Watching and listening to him during an hour session was quite enlightening. Doug knew so much, had a great way about him, and was so encouraging. Check out home care — with a prescription from your doctor, Medicare will cover visits, blood tests, physical/occupational/speech therapy as long as you are home-bound. Try not to go home without a support system built in for you.
  6. Be VERY thankful if you have good health care. We pay a pretty premium for a supplement to Medicare each month. It has paid off for us with two major surgeries for hubby in two years. Don’t hesitate to ask for financial assistance from the hospital. We did, filled out paperwork to list our income, and were granted a 75% forgiveness of any costs left over after insurance. Every little bit helps, and when you don’t have to worry about how you are going to pay for the care, it makes a huge difference in your peace of mind.
  7. ASK FOR HELP if you need it. Both of us have always been pretty self-sufficient and hesitant to “bother” others when we need something. Since I no longer drive, the ability to get to and from the hospital was critical — hello UBER! Several friends put the word out and we had visits, grocery shopping, rides, Secret Santa trips, and the like. People want to help out — don’t go it alone.

We still have six months of recovery ahead. Staying positive and accepting all the little advancements and baby steps are so important! And…we love our nurses!




Renaissance woman, teacher, fiber artist, lover of history and mathematics, and world citizen; defender of the truth. #twocrones

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Linda Moran

Linda Moran

Renaissance woman, teacher, fiber artist, lover of history and mathematics, and world citizen; defender of the truth. #twocrones

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