About 3 weeks after we got started on our Tandem Tslim X2, I got a call from Edgepark that Abbie’s Dexcom had finally been approved and that it would ship out ASAP! Overjoyed was not even the word for it. Daily conversations with our insurance, hold times, transfers to higher ups in the insurance, conference calls with the doctor and insurance, and of course some social media slams to boot…they were finally over! Edgepark was shipping everything 2-day Air so we would have everything by November 1st. I immediately called our CDE so we could set up training (although I had read so much I thought this was redundant and really didn’t see the point, but I did the right thing). She told me they were booked out till December…ummm nope. I remember telling her the equipment would be there on November 1st so we would be at her office when it opened at 7:30am on November 2nd and that we had waited long enough. I knew none of it was her fault and I later apologized but I was frustrated and just wanted Abbie to have all of the best equipment functioning.
November 2nd rolled around and I got Abbie up around 5:30am for the hour and half drive to the doctor’s office. We got there and I had read so much of the manual and watched so many videos we were in and out in about 30 minutes. Easy-peasy. Abbie was so happy. She knew that this would drastically decrease her finger sticks (hopefully around 2 a day unless something was off) and she no longer had to take shots because of the pump…her T1D life was looking way better. The last month on the pump had been wonderful, most of her settings were working beautifully. We didn’t have that adjustment period like everyone warned us about. Now I was interested to see the real numbers, the ones we had been missing in between. The ones that showed me what food really did to her body and how her insulin reacted to it.
I learned over the next month that Abbie would wake up around 110, beautiful right? She would eat breakfast, which normally consisted eggs, bacon, and a thin bagel…sometimes cereal but very rarely. We learned that on school mornings by 8:30 she would skyrocket to around 280-300 and come back down on her own by lunch which was at 12:00. It didn’t matter what she had for breakfast it did the same thing. We also learned this didn’t happen on the weekends only on school days, weird right? So, I put in a call to the CDE because well I wasn’t comfortable with changing settings yet. I waited about 4-5 days and never heard from her so I sent an email. She responded 2 days later and we changed her carb ratios for breakfast. Well that worked slightly but then crashed her on the weekends. I put in another call, but the voicemail said she would be on vacation till the first of the year and unless it was an emergency to leave a message or gave me another number to try. I don’t blame the CDE, the office is extremely busy and overwhelmed I think which is why there is such a long wait between phone calls, but I knew right then I had to learn how to do somethings on my own.
So, I went reading the Tslim book again and learned how to make a separate profile for the weekend and put the old numbers back in there since they were always good. That way on Friday afternoon she could switch to that profile and during Christmas break. Then I did a lot of research on Basal Rates and Carb Ratios and what the CGM should look like for both if they need to be adjusted. Let me just say it is amazing what you can find on the internet from REPUTABLE sites and on Facebook T1D groups. They will help you with everything! So, I learned her breakfast problem was a little bit of both, basal rate and carb ratio. Basically, her basal rate for the morning started at 7:00am because that is when she got up, but it needed to start before that on school mornings, and her carb ratio needed to be dropped little by little until we got it right. Let me tell you it has taken a while (we finally got it in March of this year) to get it right (and I am sure it will change again), but we went from a basal rate of .22u/hour starting at 7:00am and a carb ratio of 1u:25g and now we are at .40u/hour starting at 5:00am until 11:00am and a carb ratio of 1u/6g. She doesn’t crash and her numbers stay beautifully without temp basal rates or boluses in between on most days.
We got through Christmas without any kind of extreme events or major highs or lows. The Dexcom G5 was teaching us so much that we never would have learned without it. The new year rolled around and it was finally time for her next Endo appointment. We were not seeing her normal Endo this time we were seeing a Nurse Practitioner, which I was hoping would be better, maybe for once I wouldn’t be scolded. At this point her average numbers were around 150mg-160mg and I was confident her A1C had come down somewhat. Remember, last appointment 3 months ago it was 8.8%. Well the nurse informed us at this appointment while we were waiting on the NP, that her A1C was now 7.3%! Ok, we were getting there. So, the NP came in and I asked her about the morning breakfast concern and asked if we could lower her target number. I was told a flat no on the target number and was told that as long as Abbie comes down on her own from breakfast there is not an issue, that breakfast is hard for all T1D patients.
It was in that moment I decided my research was going to have be my guide and it was time I stopped relying on the doctors and the 3-month appointments to make the adjustments. It was time we went to the appointments just to get her A1C checked, to make sure she was healthy, to get her prescriptions, and call it a day…unless there was just something I didn’t understand or there was an emergency. And I am happy to say, I have only called the on-call number twice since then and the last time was my final straw with the practice that caused me to find a new one… but more on that in another post….