Given my recent experience from an in-patient perspective, I thought I would share my insights on how I would do things differently when advocating for my diabetes care during a routine hospital stay. I haven’t been hospitalized since the day I was diagnosed, well over 22 years ago, this is obviously a good thing that I have not had to worry about. However, with anticipating my impending c-section and lengthy hospital stay in the postpartum unit, I knew that my baby’s health would be the nurses primary concern, and that my diabetes would be an afterthought. Well, I was not so pleasantly surprised at how hands-on the rounding physicians and residents would be regarding every last detail of my blood sugars and pump settings.
I chose the particular doctors and hospital that I gave birth at because they are world-class in care for high-risk pregnancies, particularly with Type 1 mom’s. I knew that I didn’t really need anyone to adjust my settings for me, but given the likelihood that I would need some assistance, particularly on the day that I was to give birth, I wanted to make sure I was in the best care possible, which I was, but in turn I ended up becoming quite a problem patient for those on-call Endo’s trying to help me.
I was completely prepared for the day of my c-section to relinquish all control and hand it over the glucose and insulin drip IV’s and the labor and delivery nurse. Thus I allowed them to not only take over my entire lower half of my body but also for my pump. This wasn’t easy, but I was at least prepared for it. They did a great job, and kept my blood sugars stable at right around 80-100 before, during and after delivery. Unfortunately, it is easy to forget that not only do hospitals have policies that they must abide by, but that the doctors and nurses are just legally doing what is required of them when it comes to following their policies. By me being difficult and constantly questioning “why” didn’t do anything but frustrate those trying to care for me. They wouldn’t let me leave the labor and delivery unit until I was over 100, and so when I stayed 98 for over an hour and they wouldn’t move me, you can imagine I began to question authority. The good news was, I didn’t push it too far because my baby girl was right beside me, which is all I really cared about.
Once in my postpartum room and for the remaining days of my inpatient stay, I had the Endo on-call as well as many nursing students come into my room to see what my last blood sugar reading was, this was okay. Where I had an issue, was that on their little list of things to ask me, they would constantly come and quiz me “Can you tell me what your basal rate is right now?” By the third person asking this I said, “My pump does the thinking for me, whatever your chart says my basal rate should be at 6am, that is what it is! It changes on its own!” Now, I understand they were just doing their job, but this is where the staff need to be inserviced on insulin pumps, since many of the nurses actually admitted to me they had no idea how a pump worked. Also, the biggest thing I regret, was not listening to my gut when it came to my post pregnancy pump settings. My Endo, doing what she thought was best and based on the fact that the average women with Type 1 needs next to no insulin right after giving birth, had cut my basals by almost 75%. I thought this was way too much, but I listened to her advice. For the days following the birth, and even now, four weeks later, I am still struggling with highs. I never went below 60 in the hospital, which for me, is not that low. The Endo on call ended up arguing with me because he wanted me to cut back on my basal, when I had only 1 low (with no pattern to give reason for lowering it), and I said “No!”. There is no pattern! Everyone kept telling me how bad my lows would be once my milk production ramped up along with my nursing. Well, it NEVER happened. I do have lows here and there, but they are all manageable. Here I am four weeks later, still trying to adjust my basals and other pump settings to find a happy medium. If I had followed my gut, and the fact that I know my diabetes and my body better than anyone else, I like to think I could have avoided some of this frustration.
I can appreciate the policies that are in place and the medical professionals who try to go off of their experience with other patient cases, but at the end of the day, here is what I would have done differently:
- Communicated with my Endo before giving birth that I wasn’t comfortable with the settings we agreed upon and try to find a happy medium that wouldn’t put me at risk.
- Do a better job of communicating with the nursing staff while in the hospital; including writing my basals on a large notecard to keep next to my bed so when they came in to ask me every 6 hours what it was, I could just point to it!
- Fix the time on my damn meter so that when they wanted to know what my blood sugar was the last time I checked it, I could answer them (without making up a number to get them to leave the room) through my sleep deprived and fuzzy brain on pain meds, I could barely remember what my last BG was.
- Do a better job at respecting the fact that they have a job to do, and instead of getting frustrated with them, stop and explain that I’m not comfortable with their recommendations and that as long as I am able to feel my lows, adjust my own settings and check my own blood sugars that they respect my decisions on how I manage my diabetes.
- When I got home, I should have put my sensor on RIGHT away to determine what needed to be changed in my settings. I was a bit overwhelmed with a newborn, so didn’t get around to putting on my sensor until a week ago (which I still have yet to upload and send to my Endo).
- If you are planning a routine hospital stay, make sure you are aware of the policies and procedures that they following regarding diabetes control. If you are not comfortable with something, make sure you find out how much room they will actually allow you to control your own diabetes. Remember, you are legally in the care of someone else, so there is a very fine line, as everything needs to be documented… if you saw my discharge papers, they probably say:
“Bitch in room 580… her blood sugar must be high” Oh well!