Beyond Frustrated!

 I got a call today from the Children's Hospital.  The kind nurse was calling to make sure I'd received a response to a voicemail I left for them on July 30th before she deleted the note since no one had marked it "done".  But no, I had not received a call back before today, no it has not been resolved, no. 

I understand there are procedures and rules. I understand there are hoops to be jumped for insurance. I understand the Endocrinology Offices moved at the beginning of the year and they are still trying to sort that. I understand that there is a pandemic.  I understand that I am just one mom trying to provide the best health care for one child.  I understand but I can't just stop...I have to keep making calls and sending emails and reaching out.  If I don't keep pushing it seems the procedures that get us the medical equipment don't proceed.

We knew in December we wanted an insulin pump and we told our care team that. Our insurance company requires 6 months post-diagnosis before a pump can be approved.

We talked about moving to the insulin pump at our 30 day follow up.

We talked about moving to the insulin pump at our 3 month follow up and we tried to get everything we needed to do done at that point but because of the pandemic they were not doing pump assessment classes but were going to start doing them virtually "soon" and they would call us.  That was the end of February. 

At the end of May we had our 6 month follow up.  We said we wanted the insulin pump.  We presented our research to our provider and explained which pump we wanted and why we had chosen that one. He said pump assessment classes would be starting virtually "soon" I pushed and grumped and he finally relented that he wasn't sure when the assessment classes would be going virtually and maybe since we had done the research we could do the class as self-study and he had a nurse send us the power point.  He said he would submit the paperwork for our pump right away and would reach out to our pump representative that day.  He also said someone would call us in 3 days to see if the power point raised any questions. We didn't receive a call but I sent him an email stating that we did the slideshow, had no further questions, and still feel we had chosen the right pump for our son at this time.

We waited through June...nothing.

In July we started emailing and calling and leaving messages and connecting with our pump representative.  The rep said they were still waiting for the initial orders from the hospital.  

At the end of July we received a call from the hospital staff with "exciting news" they were going to start virtual pump classes at the end of August and we were on their list.  I explained that we weren't waiting for a pump class and then asked if she could double check that we were moving forward.  She transferred me to voicemail where I left a message saying someone would call me back in 24 hours.  Nope.

Then today I got the call from the very kind nurse just making sure before she deleted the note that my issue had been resolved.  I'm sorry, kind nurse, that you took the brunt of my emotions this morning.  I know it isn't your fault and I tried to keep my emotions under control but you ended up having to speak to a sobbing woman who is beyond frustrated with the situation.  But I had to trust you when you said you would figure out what was going on and call me back.  After all this I had to trust you to call me back...and you did.  

There are no notes in my son's digital records about the insulin pump.  This is not uncommon because medical professionals are overwhelmed right now and it is more important that they see patients than that they type their notes into a computer.  I know they catch up eventually but it isn't helpful when notes are necessary so that others people can read them and take the next step.

I did receive a return call today from that same nurse.  The notes aren't updated in the system but are on the desk of the same person who has been gathering the necessary Dexcom Data and other paperwork and we just need a doctor's signature before the whole mess is handed off to the insulin pump company to submit to our insurance.  I'm back to feeling hopeful but I wish things didn't have to be so frustrating.  If everyone agrees a device is better care and everyone is on board for having the device and the device is covered by insurance...why must it take months and months to get everything aligned perfectly to get going?  Fingers crossed that the next person I hear from is the pump rep that paperwork is finished and they are moving on to insurance.  If I haven't heard from them by the end of next week then I'll sit down with my notebook, pen, glass of wine, and an open afternoon to make all the calls necessary to prompt things again.

Daily Highs or Nightly Lows

While we continue to wait for our son to be approved for an insulin pump (yes waiting and waiting), we are continually trying to manage the ever changing demands of his T1D.  Of course we have the honeymoon period of diabetes that was giving us the sense that things were in pretty good control then we got the CGM and realized that things were in control every 3 hours but in between they were fluctuating wildly.  Now we seem to be going through a period where our current ratios and corrections aren't working and things need to change.

Since we have the Dexcom, we get to look at his patterns over days and weeks.  As someone with a background in managing data and making adjustments to affect change this was right in my wheelhouse.  Unfortunately, waiting 14 days between changes has not really been my forte.  Our medical team really likes to see a pattern that lasts over 10 days before making an adjustment to his basal insulin or even his daily ratios.  I feel like we should be making adjustments a little more frequently than that.  So, we fall somewhere in between. 

We've been increasing N's basal (long acting) insulin over the past two weeks.  He has a pattern of daytime high blood sugars.  His BG starts rising from the moment his feet hit the floor in the morning until his breakfast insulin kicks in.  Then three hours later, when the insulin should be about done and the food should be about gone, his BG starts rising again.  It also rises whenever he is exercising.  It rises and rises.  For several months we would go days without having to give a correction, just covered carbs at meals and we were good.  For the last month we've had to give correction every 3 hours all day long and at least once in the middle of the night!  So up we go with the basal insulin.  Each time it is adjusted the other ratios end up needing adjusting too.  So this process takes several weeks to get a new balance.

Well our new balance is one of the following: we can have basal at level X and he has daytime highs or we can have basal and level Y and we get nighttime lows.  Apparently we can't be in range for both day & night.  I know when we get on insulin pump therapy we can set different basal rates for different time periods so I'm looking forward to that but for now I'm stuck with high blood sugar during the day but a nice steady line through the night or in-range blood sugar during the day with a falling line and a need for a snack in the wee hours of the morning.  I'm opting for the 2 a.m. snack right now since I know the long term effects of high blood sugar and because our son does have a CGM that wakes me when the BG gets below the level I set for it.  The weirdest thing is that it doesn't take much in the night to correct the problem.  He BG falls slowly over several hours until it dips out of range.  I give 4-8 grams of carbs and he bumps back up to 150 then starts falling slowly again until he wakes in the morning.  Thankfully we have the dexcom to wake me up and he is able to crunch up a glucose tab without much memory of being awakened at all.  

I'm tired though!  I'm no spring chicken and waking in the middle of the night is hard on me.  I remember when my kids were under 5 and there was so much nighttime waking going on...how did I do that and still work?  I guess age is a factor.  TIRED.