Horrific Hospital Protocol

8/6 in auto collision. Admitted local hospital which is a Trauma Hospital. Turned out no internal injuries only fractured sternum & 4 ribs. Seatbelt injuries. Only in hospital 4 days. During stay Hospital protocol for managing my bg consisted of testing bg every 6 hrs & administering insulin per a sliding scale. Imaging lost my G6 (transmitter). Hosp doctor, Gerontologist, couldn’t understand how I could use my Tandem t:slim x2 without the CGM. I was in terrible pain & gave up trying to explain. At another hospital I was always allowed to self-manage bg with whatever pump I had. I considered protocol irrational considering insulin needs of a T1 - Basal, meal boluses, bg correction boluses. The protocol of hospital only addressed giving corrections. My bg was high entire 4 days. At times complained of feeling sick bc of high bg. I in no way fault the nurses bc they had no authority to proceed without an order from a doctor. 30" later I would receive additional units of insulin for correction. My need for basal insulin nor the need for bolus at mealtine was not part of their protocol. I have received many suggestions of who I should have called or what I should of done. My only concern, & continuous need during 4 days was pain relief. I survived seemingly no worse for the wear.

I posted my experience on fb page, Dexcom G6 & Diabetic Stuff. Seems a lot of hospitalized diabetics have had experience of being allowed to self-manage bg using pump with or without CGM. However many diabetic readers posted their own horrific experiences of bg mis-management by hospital policies. None of us should be judged bc of what we did or didn’t do at the time we were hospitalized. The experiences are so wide & varied I believe a solution for good bg managementvduring hospitalizations lies in larger medical organizations addressing the issue. I want to raise awareness of this issue at a level above local hospitals. To that end I have sent an inquiry via email to JACHO. Every health institution deals with JACHO. I plan ro develop a concise explanationof the issue & create a standard letter for larger hospitals & organizations who may be able to address the issue. The University Medical Center where I go for pump management has an internal committee to work on having a beneficial protocol for bg management throughout the medical center.

If you have had a good or bad experience of bg managenent during hospitalization feel free to share. Suggestions of organizations to contact will be accepted.

PS. I want to add the nurses in both IICU & on Med floor were incredibly kind & caring in trying to make me comfortable.

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This is my story regarding this subject. When people give advise that all insulins are basically the same and need to research info on that statement because I too find it insulting and I’ll explain why. When I had my quadruple heart bypass, the day after I was assigned a hospitalist to cover my T1D. He had me on a bolus only regiment depending on my BGL’s. My BGL’s went up to the 300’s to 400’s without eating anything due to the high’s causing extreme nausea. He ordered BGL’s to be done every hour on the second day and boluses injected accordingly to a schedule he had come up with to prevent dose stacking. Nothing changed. I was getting worse by the hour. The third morning he came in my room and said he was at a loss of what to do and accused my wife of bringing food in that the nurses didn’t know about. He said the boluses of Humalog should be enough to handle my high BGL’s to which by then I was severely angry at him for accusing my wife of something she didn’t do and yelled at him saying I’m on Novolog not Humalog because it doesn’t have any effect on me and my wife hadn’t done anything wrong. He dismissed my comment and said he was leaving my case and insulins were the same as he stomped out of my room. The finger sticks continued for the rest of the day and my levels were increasing to 400’s to 500’s. I felt like I wanted to cash in my chips and leave this world at that point. That night my nurse came in to do a BGL check and found me in the dark on the edge of my bed clenching the heart shaped pillow to my chest as I was vomiting any water that I had drank and my thirst was unquenchable. The nurse asked what she could do to help me and I said I need my Novalog. She explained that the hospital had a contract for only Humalog and had stopped keeping Novalog. I said; Well I guess this is how it’s going to end for me. She said let me see what I can do and left. She came back in an hour to do another BGL, I was 450. She reached into her pocket and pulled out a box of Novalog, syringe and prep pad. I asked where she got the Novalog from and she said she had gone to the hospital pharmacy herself and looked in the refidgerator and found 2 vials that had been over looked. We discussed the sliding scale dosage and she let me do everything myself. She continued to do BGL’s throughout the night and noted my BGL’s were falling by the hour. In the morning as she was leaving her shift she came in and told me that my BGL’s had leveled off at 153. I was able to eat a little and drink water and keep it down. Once I ate they started me on my Lantus and Novalog and I went home in 2 days. Thank God for a nurse that went above and beyond and believed my life experience, and no I don’t believe all insulins are the same.

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Sounds tailor-made for JDRF’s Advocacy efforts. I just sent a message, and will let you know what I hear back. Here’s to working to fix stuff!

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Hey @Hen51 glad you are ok I am sure it could be worse. Also, even though the hospital should be ashamed, you didn’t die of high blood sugar and so that’s a good thing too.

The 3x I’ve been in the hospital I had an opportunity to demand that I ALONE am in charge of blood sugar, which was written in to my chart, and I had freedom with meds and checking and so everything went wonderfully with blood sugar control.

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So sorry to hear. Your experirnce sounds very life threatening. My hospitalist was much the same. Only knew how to repeat protocol of hospital ad nauseum.

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Joe, Wish you had been there to deal with my hospitalist! I heard from others on Dexcom G6 & Diabetic Stuff who really did experience life threatening circumstances. One woman who went in for operation went into ketoacidosis & had to be moved to ICU.

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I was thinking as I was reading your story that I would most certainly sue the doctor and hospital for malpractice if I ended up in DKA due to mishandling of insulin.

Don’t think I myself ever got close to DKA bc I start feeling a certain kind of sick around 225 if it stays up. But another T1 posted today on fb, Dexcom G6, that he went into DKA then was transferred to CCU. Another man posted real horror story of bg mismanagement after open heart surgery. Attitude of hospitalist unbelievable.

Henry @Hen51 , it is good to see you back on your feet after your two extreme trauma events - first the car wreck and then the greater trauma you experienced while in hospital. Thankfully my hospital experience has been more positive in part thanks to a word from the GP I’ve been seeing for 20+ years.

I went into ER on a Sunday because I couldn’t bet my BG below 500 in spite of running my pump at 200% [no CGM at that time] for more than 18 hours even with injecting myself with Humalog every two hours at a rate of 25% of my usual total daily insulin dose. The “sick day” regimen I was taught at Joslin 55 years ago. After a few hours in ER when lab test results were being reviewed I was admitted because my blood counts were way inverted and it was obvious a significant “infection” was coursing through me. Turns out after 9 days in hospital under heavy antibiotic plus another three weeks of returning every day for IV antibiotic that I had a cancer.

What may have opened the hospital staff to “Self Management of Diabetes” for patients who understand was the word of my GP, who dropped in on me at 5 AM Monday when, that I would manage my diabetes and staff would follow my direction. There was some resistance but everything was okay and within a few days my BG was behaving with the pump at 150% and I:C ratios 50% inflated.

Possibly Henry, what you are looking for here is that because of my experience and with the support of a couple of doctors [I began with a new endocrinologist while hospitalized] hospital routines have been made more flexible. Certainly, because of my insistence, the surgery center now permits insulin pumps to be kept active - I’ve spent time with the anesthesia doctors at two hospitals and three outpatient surgery centers writing insulin procedures.

Just this August 3rd, I had surgery at the hands of a new surgeon; during pre-op, I told her that I would keep my pump and CGM operating with the “Surgery Profile” I active - she asked me a few questions and was satisfied with my plan. During the last few years, I’ve been asked by doctors for suggestions on how to educate doctors so I’ve volunteered my services. My “handwriting” is now on some hospital/surgical protocols.

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Sorry to hear what infection did to you. I can’t imagine how you felt having bg over 500 for that long. Before this recent hospitalization I’ve never had problems keeping my pump & being allowed to self- manage my bg. This time I couldn’t advocate too much bc of pain. Nor again bc of pain did I have the wherewithal to make phone calls. I’m glad I was out in 4 days. I would only use that hospital if there was time to get the ducks in a row to allow self-management.

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Thankfully with one exception my hospitalizations have been for directive procedures, only one of which was after I had my pump. As they were prepping me I gave the medical personnel at my bedside a crash course on my PUMP, how to read my numbers, and what to do if they started to drop. I was told they could only take instruction from my doctor, which meant I would have to postpone last minute or take my chances. I chose the latter, fell asleep, and woke up to a nurse shaking me frantically and calling my name. I felt funny and not just because of the anesthesia - I had gone low and was recovering. I made a note to self that if I had future elective procedures I would have my endo provide instructions on what to do. Thankfully in my area we have Diabetes Treatment Centers at some of our hospitals and endo’s office is at one of them so if I have a choice in the matter I would go to hers or one of the others with a DTC. I don’t know how much choice a person (or someone speaking on their behalf) have in an emergency but I’m glad you are working on this important mission. And I’m glad you’re recovering - I hope you’re back to 100% soon.

@Hen51 ,

Henry, check your FB post. There is another FB group with some pumping health care professionals.

For everyone following this group, I had to have several procedures over the past 20+ years of Dexcom & pumping. A neighbor is my “Attending Anesthesiologist”, yeah, right, not the usual term. My neighbor oversees any procedure I have. This is for inpatient or outpatient. Here are the guidelines we assembled and have tested when I had an out patient procedure requiring an anesthesiologist (an MD) and an anesthetist (a Certified Registered Nurse Anesthetist - CRNA). So here it is:

Hospitalization or procedure - revised

Who are the people to work with for a procedure or surgery if you wear an insulin pump and Dexcom G6 CGM.
· Surgeon or physician performing the procedure.
· Anesthesia staff (anesthesiologist [an MD] or anesthetist [specially trained RN] or person responsible for monitoring your vital signs (EKG, BP, Pulse, etc.) during the surgery or procedure.
· Endocrinologist who monitors you, your pump, etc.
· Facility CDE, if any, should be able to support facility staff caring for you and be knowledgeable about the technology.

Work with your surgeon, endocrinologist, and anesthesia team. Every time I have a procedure, I start with my anesthesiologist. She arranges my anesthesia care with either an anesthetist or anesthesiologist or both for some long or complex procedures.

Starting two weeks before the procedure, anesthesia works with the surgeon to identify the operative area both for incisions as well as imaging (x-rays, etc.) areas.

This early planning with my surgeon and anesthesia allows me to place my CGM properly and time pump site change and location so my (1) site is fresh, (2) pump is full, and (3) in the best or agreed upon position. Make certain all sites are in locations consistent with best practices. A CGM on an arm may need to be removed because it interferes with blood pressure cuff placement. Use the longest tubing possible for pump site sets. Long site set tubing allows anesthesia to move the pump about their work space.

On the day of surgery, the CGM is compared to a STAT or rushed preoperative blood chemistry including a glucose. The CGM reading at the time the labs were drawn was noted and shared with the operative team. Anesthesia and I review the pump, including how to read the CGM from the pump, and treat elevations reported by the CGM. Having the primary anesthesia staff practice with a bolus of 0.05 units puts everyone’s mind at ease. Using 0.05 units for the practice bolus is so small as to be negligible and the smallest the Tandem X2 pump will deliver.

Assembled below is a collection of documents to support the way a health care team should do things with the CIQ enabled pump & CGM.

These links are for the documents recommended for printing for planned hospitalization or an outpatient procedure. It may be prudent to have up to 5 copies of some documents for placement and review by selected team members.

Ask for a pre-procedure or pre-operative visit with the anesthesiologist to review how the pump works. Show and ask for a return demonstration of bolus administration. The ideal dose in this situation could be 0.05 units (the smallest CIQ will give). In an adult, this is almost a non-therapeutic dose.

Control-IQ Technology –
what CIQ & CGM do working together

View System Status with CGM

Administer a bolus

Load a Cartridge

AutoSoft™ XC Instructions for Use

Tandem Documents & Resources

https://www.tandemdiabetes.com/support/documents

If another site set is used, there are links on the Tandem site to use in place of the AutoSoft site set above.

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Thank you for your very helpful and detailed information @987jaj . I was naive enough way back when, to think my quick instructions would be enough for the OR staff to go on - obviously I was wrong on many levels!
Regarding your minimum practice bolus of 0.05 units, do you turn off CIQ during your procedures? Curious, I tried manipulating the settings on my pump to allow for such a small bolus, and had to turn off CIQ in order to program a manual one by units (rather than carbs).
Did I miss an update? Come to think of it consider that a rhetorical question - I haven’t plugged in, in ages so I’ll do that today: and that being the case, no need for anyone to give details - I don’t want to hijack the topic (again)

@wadawabbit

Dorie,

For your specific question, CIQ is left in its native mode, no sleep, no exercise, no funky changes. Rationale: those settings are tested to keep generally in the center of the therapeutic range with safeties at the borders of high & low.

I don’t consider this a hijacking. My childhood was spent with three US Military Colonels who analyzed ever task to demonstrate “anything that can go wrong will & proper prior planning will provide pristine proud performance “.

Questions bringing greater illumination to a tactical situation of the timing of interdictions with falling glucose levels automatically open the theater of discussion to actors like pumps, MDI, & CGM experience.

It is important to teach all here the importance of broad problem inspection when answering a simple question related to “how to advocate in a hostile hospital environment?” My answer, if possible, have medical insurgents.

Message me.

Great advice for planned admissions. I was trauma center admission & separated from my wife until settled onto IICU. Conscious entire time except when pain meds administered. I suppose though that we could work out plan for any other emergency admissions. I’ve had planned surgeries and in those cases I consulted with surgeon & anesthesiologist in advance.

Update on communication with JACHO. Only received email back with complaint form & request to name specific hospital. Reader missed my point on the broader issue of hospitalization of Type 1’s. I have decided to send a letter to the Chair of the Commission. I think this work needs younger people to pick it up.

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Thanks @987jaj . Not sure about your reference to hijacking and request for a private message. Was that directed to me or did I miss something in someone else’s response?

Hi Henry @Hen51! On June 11, I fell 8 ft down concrete steps on my way to my daughter’s graduation. I fractured my right elbow, broke the bones in my left hand, broke the bones in my left wrist, shattered the socket of my left wrist joint, and dislocated my left wrist. In the emergency room, I told the nurse that I was a type 1 diabetic. She froze and asked me if I had brought my insulin with me. I was wary because I had read about a lot of bad experiences in ERs, but I told her I had my Humalog and Afrezza with me and was monitoring my blood sugar with my Freestyle Libre. The nurse visibly relaxed with relief and asked me if it was ok if I took care of my blood sugars and they would focus on my injuries. I was so pleased! The nurse said she was afraid I had left my insulin at home and that they would then have to take over the care of my Diabetes. According to the ER nurse, a lot of type 1 diabetics leave their insulin at home and figure the hospital has it so why bother? The only incident I had was when a lady from the administration came by to give me paperwork and saw me inhale my Afrezza. By the look she gave me, I think she thought I was doing some type of illegal drug!:grin:

I’m so sorry to hear about your injuries! Either you missed graduation or toughed it out during the ceremony. Glad to hear things went well for you in the ER and I hope your heading is coming along. Congratulations on your daughter’s graduation tough mama!

Thanks, Dorie! I saw her graduate from a wheelchair! Then my husband took me to the ER. I had to have the bones in my hand and wrist manually moved back into place and a week later had surgery to put in a plate and a lot of screws. I am a lot better now! Everything is mostly healed. The anesthesiologist did have to give me glucose during surgery, though. He really liked checking my blood sugar using the Libre!