Let me start off by whoever made up this name is a deceiver. When I read up on the “Honeymoon Phase” of Type 1 Diabetes I read all kinds of stories about kids going from a ton of insulin every day to barely any insulin every day; to scary highs and scary lows. The parents were calling the doctor’s office every day trying to get the dosing correct but still were having a hard time. During this phase the body’s pancreas is still functioning somewhat and still pushing out insulin which makes the dosing harder.
So this post will be a summary of the next year of Abigail’s diagnosis. When she came home from the hospital she was on 5 units of Levemir (long-acting) insulin. Basically, this is a 12-18 hour insulin meant to keep her blood sugar in check from the morning until almost the next morning. Over the next couple weeks we noticed she would be really low by the time she came home from school, usually around 50 or 60, or by the time she went to bed. So, by April she had been dropped from 5 units of Levemir to only 1 unit of Levemir.
Everything seemed to go smoothly for a couple of weeks. School let out for Spring Break; her Dad and I went on a mini vacation to Las Vegas that had been pre-planned before her diagnosis and everything seemed to be going fine. My Mom noticed a couple of lows, around 65, while we were on vacation but nothing to be too concerned about considering the amount of exercise she was getting. However, the first week back at school, everyday around three to four times a day she began getting lows again down into the 40s. So the CDE lowered her Levemir to a 1/2 unit in the morning! Have any of you tried to draw a 1/2 unit of anything into a syringe? It has to be the most tedious thing I have ever done. Even at a 1/2 unit she was still getting the lows 2-3 times a day and sometimes more. On April 26, 2017, Abigail was taken completely off of insulin.
To most T1D parents’ of children in the honeymoon phase this actually would not be a big deal, as this happens all the time. However, this is when our honeymoon phase became our “denial phase”. Abigail remained on absolutely NO INSULIN for over a year! We only had to check her blood sugar around four times a day and that was it. We went on family vacations to the beach that summer and amusements parks. We even took a 10-day vacation to Disney World in October. Nothing ever changed even though I kept waiting for the other shoe to drop.
The longer she went without the need for insulin the more it made my husband question her diagnosis. “Babe, maybe we should get a second opinion, maybe they were wrong, something just feels off.” The problem was that I had seen her antibodies tests and I knew with every fiber of my being that they weren’t wrong and I had come to terms with it. I had prepped myself so much for insulin shots, nightly checks, food logs, and how to cope in our marriage, that I had not prepared myself with how to cope with this. How do you prepare yourself against hope? It’s not that I didn’t want to have hope, I didn’t want to have false hope. My husband was full enough of the denial and false hope for the both of us, and to be honest during that first year there were a lot of arguments over it. I needed us to be on the same page and create a united front for our entire family.
So, in May of 2018 when I noticed her Blood Sugar started to creep back up I tried to warn Andy the best I could. But denial is a funny thing, it completely blinds you and until it hits you right in the face, he was not going to see it. That was fine cause I knew we would get back to our united family unit when he came to terms with this diagnosis once and for all, we had been married for 15 years after all, we could survive anything. When her average numbers were around 140 during the day I finally called her CDE. They put her back on 1 unit of Levemir and I think it hit Andy like a truck. The denial faded away and he finally understood that this was our diagnosis as a family and we could do this. But I knew we were still in the honeymoon phase and we still had it easy… the other shoe still had not completely dropped.
Fast forward slightly to the end of June. School had let out and I had noticed that even with swimming and all the exercise that summer brings Abigail’s blood sugar over the past couple days just keep creeping up. It was a Friday, before lunch she was around 150…not too bad but let’s get a call in since I had to work that night. When I called I forgot the office closed at 1:30 on Fridays so I left a message. I had to start getting dinner and get myself ready for work. I had Abigail check her blood sugar again and now she was at 320! I panicked. I absolutely did not want an Emergency Room visit but I had no way to bring down her Blood Sugar and no idea how to do it. We were never trained on anything other than Levemir.
The on-call doctor called me back, who was not her normal endo by the way, and asked me what was going on. I explained everything and he immediately said “ok, well I think we need to adjust her basal rates and maybe lower her carb ratio.” I sat silent and told him I had no idea what he was talking about and explained we had not been taught that. He was wonderful and told me I had two options: 1) bring her into the emergency room, where they would hook her up to an IV, to get her numbers down and have one of the nurse’s or on-call staff try to explain everything there or 2) he could call me in a prescription for fast-acting insulin and he could explain everything to me over the phone. I was confident in my common sense and my ability to listen so I opted for option 2. In thirty minutes I received the quick and dirty of carb ratios, a target number, basal and bolus and when I should give her insulin. We would be scheduled for a more thorough training class but that wouldn’t be for about 2 weeks so we would need to hold out until then. By the next morning, her blood sugar was down to 130 and I thought two things….
We can handle this….
The honeymoon is over…..