We had our second virtual meeting with our endocrinologist this week. We haven't had an "in person" check up since our 30 day meeting back at the end of December, 2019 thanks to Covid19.
Our first follow-up appointment was 3 months post diagnosis and was a phone call. This is our 6 months appointment and we did it via zoom. I know everyone has different experiences but we've felt super positive about everyone in the medical profession we've worked with since our son arrived in the emergency room the night he was diagnosed with type 1 diabetes in diabetic ketoacidosis.
We checked into our zoom meeting by first filling out a question form and providing our questions and concerns as well as our current ratios and insulin dosing habits. A nurse showed up in our meeting next and went over our concerns as well as empathizing with our frustration about the "brakes" that have been placed on our desire to start N on insulin pump therapy caused by the corona virus distancing limitations. She was understanding and helpful.
We met with our endocrinologist next and he had obviously spoken with the nurse because he listed our concerns first and made sure we got answer to our questions. We then reviewed my son's CGM data (still loving that Dexcom G6). We talked through some high-glucose times we have run into lately and then really jumped into how we could get started on that insulin pump. We settled on doing our first "pump assessment class" in a condensed version right away. We are now waiting for our insurance pre-authorization team and whatever hoops we need to jump through for them.
While we had left the hospital in December knowing we would ultimately have our son on an inuslin pump we have had to modify our timeline. Insurance-wise, he became eligible for the pump at 6 months post-diagnosis on June 9th. We knew we'd need to start early based on our experience getting the continuous glucose monitor so we started those conversations at our 30 day check but by our 3 month check the novel corona virus had shut down everything in our state and we suspected it would delay things. After our appointment in May we became concerned that getting insulin pump therapy may be delayed until 2021 but I'm currently still holding out hope that we'll have N on his first insulin pump by his diaversary in December.
I can't believe I'm already thinking about his 1 year anniversary of diagnosis. Probably because my friend D posted about her daughter's diaversary on facebook recently. I remember the first few nights we were home from the hospital and I called the endo nurse every night...yesterday I gave an over-calculated a correction (by a lot) and we dropped into the scary low range. We even got out the dreaded red-boxed glucagon but it never occurred to me to call the endo nurse. We've come a long way. (D, if you are reading this, you were the one I almost called :)).
So we are on our way to an insulin pump and we've been using our CGM for over four months now. Our numbers are looking pretty good. N is out of range 30-40% of the day right now but our endo says that is fine and probably equates to an A1C of 7-8, which he says is fine but I know it is not as good as we want it. We actually don't know his A1C because we haven't done it since we were in the hospital when it was so bad that no one wanted to tell me what it was; we were told it was over 11 though.
We were supposed to have received an A1C test from home kit a couple weeks before this appointment but it never came and since they hadn't told me it was coming I didn't know to report it when it didn't show up. I am curious what it will be. Our Dexom gives us a "best guess" based on our CGM reading and so if it is near that number we are doing okay.
We scheduled our next appointment for October and it will be virtual again. We will have to go to the Children's Hospital 2 hours away for the one after that, probably, but we'll see when we get closer. Our team told us we were doing fine. We try our best, re-read parts of our pink panther book every couple months and try to make smart, sustainable changes.
Things are not as scary or difficult as I feared when I got the diagnosis. We've adjusted to our normal but we still want the best possible outcomes for N so we are fighting for that insulin pump. That being said, we choose an insulin pump that doesn't yet have an auto connection to our glucose monitor so it won't be able to act like a pancreas on it's own like some of the others. To remain competitive, I know that technology will come and for our chosen pump it is supposed to come next year but we'll see if that happens. We didn't chose the pump that had that capability for a variety of reasons but the most significant is that our son is 11 and we want his first experience to be as "low impact" as possible and that meant an easy site insertion and limited fussing with tubes or removing for showers etc. This is best for his life-style as an 11-year-old boy and in four years he will be eligible to make a change and his life/needs will be different as he enter High School.
I still feel blessed, looking at him, that he is in our life and he will have a happy and full life. That maybe wouldn't have been the case just 100 years ago during my grandparent's time. I am thankful that I live now and that our son's illness is so very manageable.
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