Fight for what you want…

So far, we have gone through Abbie’s story from the beginning.  I explained our “denial” phase and how the next year seemed like the best and worst year ever.  I have told you about our trials with her old endocrinologist.  You been told about our fight with the insurance for her pump and her Dexcom.  And then how we fought to advocate for our daughter at her school.  I don’t want you to get the wrong impression, we LOVE Abbie’s school (well her Elementary school, we don’t know her Middle School yet).   However, we wanted Abbie to know that she needed to fight for what believed in and what she needed. 

As I told you she started out on a Tslim X2 back in October of 2018 and loved it.  She chose the pump, mostly based on features and because of the ease of the face.  It looks a lot like a phone.  I was caught between the Tslim and the Omnipod but I was not the one that had to wear it and would ultimately be using it on a daily basis, so we let her make the final decision.  She wore it with pride and the only time it caused her any kind of grief was at gymnastics when she had to unhook from it for an hour or when someone would ask about the tubing while she was waiting for her class to start. 

This was from October all the way until summer hit.   And that is when the major challenges set it.  You see my daughters LIVE in the water during the summer.  She discovered she had to unhook from the pump anytime she went near the water, which was every day.  Then she could only be unhooked for an hour at a time before she had to hook back up to it.  This began to get bothersome around the end of April just when the weather got warm enough to swim.  I think the final straw for her was when she went to change her site one day and the infusion needle was bent but we were not aware.   It caused her such excruciating pain.  From that moment on she had such anxiety over doing site changes it was an ordeal each time. 

I think it was around the middle of May that Abbie came up to me and told me she wanted to go back on shots.  She said she was tired of being on a pump and having to unplug for swimming and other activities.  I was okay with this but I knew it was not the only reason why she was saying these things.  I knew it was the anxiety over the infusion changes that had her willing to go back to shots.  So, I went looking again at other options even though I would be happy to let her be MDI if that is what she really wanted. 

I immediately went back to the original option of Omnipod and got her a trial pod.   She LOVED it.  She liked the freedom of no tubes and she looked up the YouTube videos of the insertion and it looked so much easier to do.   Now it was up to me to see how we could make this happen.  As most of you know, when you choose a pump you have them for 4 years period, unless you pay out of pocket.  I called her CDE and she got me in touch with their Omnipod Rep that very day.   He told me that Omnipod works a little different and that if the insurance would be willing to switch the infusion sets over to Pods then all I would have to pay for out of pocket would be the Personal Diabetes Manager.  I was pleasantly surprised to learn I would only need to pay $199 out of pocket for that and even that I could break up into monthly payments if I needed to.  So, a little over 2 weeks later we had her new Omnipod system in hand and were off to training.  

It has been about 2 months since then and we have even upgraded to their new Dash system since that one and I have to say Abbie is loving it.   She has tried every site available to her and she hasn’t complained once.  She loves the freedom that she can just hop in a pool and not have to worry about it. 

This was just one more way I learned we as T1D parents have to fight for our kids… and another way Abbie had to learn to stand up for herself.  She really had to look at what was important to her, figure out what she could live with and without, and decide if she wanted to stick with something or try something new. 

So, folks, we are about 6 months into this blog and I have to say it has been a welcome outlet that I hoped it would be.   I am hoping to have some new recipes coming in the next few days.   I am sorry the posts have been few over the past couple weeks but we are working on remodeling our bathroom and it has been taking a lot of my time.   As of this post, you are up to date!  Woohoo!  So, from here, I will be posting tidbits of things that I see are important, news facts, things that happen in our life etc. 

If you have any suggestions for the blog… ideas on content or a post idea or something I need to look into, please send me a comment and I will be more than happy to look into it!  Thanks for keeping up with us so far! 

Finally our Dexcom G5!

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….