Saturday, February 1, 2020

Hurry Up & Wait

It's been about six weeks since N was diagnosed with type 1 diabetes.  It is definitely a learning curve and making the proper adjustments takes time.  There is definitely a pattern I'm noticing though where we hurry a bunch and then have a long period of waiting.  HURRY UP...WAIT.

When he was in the Children's Hospital we were in the Hurry Up phase.  Hurry up and learn all the things so you can go home and be the best artificial pancreas you can be.  Hurry, hurry, hurry, learn, learn, learn.  Then we got home and it was WAIT WAIT WAIT.  Wait for 3 hours, check a glucose level, freak out (not everyone does this step), call the number, WAIT for someone to call you back.  Then HURRY UP and do the thing because you should have done it twenty minutes ago before you called.

Or WAIT, WAIT, WAIT three hours then check a level.  HURRY UP dinner needs to be done and on the table in fifteen minutes because we've already given the insulin and what do you mean we're out of grapes that is what we factored for fruit!

Or it is HURRY UP and send in your numbers to the team because they need to be in before 11 a.m. then WAIT for a response because you're sure something will be changed and yes it is changed, they want you to use a different ratio for lunch but lunch was twenty minutes ago.  Don't misunderstand, I LOVE the TEAM!  I don't know how long things have been this way but sending our numbers in and getting recommendations from our medical professionals is a gift and a blessing.  I don't know how they are making their adjustments to ratios and factors but however they are figuring those things out we are reaping all the benefit.  We are almost always within our target range and I have not made any decisions on my own about ratios and correction factors and how much long acting insulin my son needs.  This is a delicate thing and I am so thankful for the team who is keeping us at the right levels for my son to live his best life.  I'm just noticing that it is also part of the HURRY UP then WAIT pattern which may have a lot to do with my mental processing of this new situation; it may be my overwhelming desire to be in control.😉

We feel like we did a lot of WAIT in regards to a potential Continuous Glucose Monitor (CGM).  This device is worn for several days and sends glucose numbers to your device or iphone.  Depending on the device that is chosen you can have updated numbers every few minutes, use a program to track patterns, have the numbers sent to multiple devices.  These things are great and exciting and we knew we wanted one.  My T1D mom friend got one for her daughter and it was a game changer for how they were managing and how comfortable she was as a parent.  She could check numbers while her daughter was at a friends house or at school.  She could see patterns and make smart adjustments as she got more familiar.  She started to extend the time from when she gave insulin to when she gave food so that the two peaks would match up better keeping her daughter in range better.  We knew we wanted a CGM but WAIT WAIT WAIT our insurance doesn't cover these until 30 days after a diagnosis if you take good data in your book.  We took data (and would continue to do so even with the monitor) and we waited until we got to 30 days & we reached out to get the device.  HURRY UP they need a copy of this and a prescription from that.  So we hurried and got the right person with the right thing then WAIT again because from the time you ask for the device it can take 4-6 weeks to get all the right signatures and permissions and for the company to get the order and for the device to come to you.  No tracking number...we just have to WAIT. (but it is coming straight to our door so one day we'll come home to a nice surprise and then we'll be in the HURRY UP mode for a few hours probably).

I expect we'll find ourselves in a similar situation in a few months when we are ready for an insulin pump.  Right now we are in the WAIT period for that.  Our insurance requires that N have his diagnosis for six months before he can be considered for the insulin pump.  I get it.  We need to learn things the "old fashioned way".  Actually the way we are managing diabetes is relatively new.  Compared to even 20 years ago things are new.  Treating diabetes with insulin is new in the last hundred years and in the scheme of things that's not very long in medicine.  It's long for a human though.  We are learning to finger poke and check glucose, we are learning to look at that data for patterns and to make adjustments to keep those numbers in our target range, we are learning to dial up our insulin and give the injection, we are learning how N responds to all of these things.  We will need to be able to do these things proficiently even after we have a CGM and an insulin pump (if we get approved for those).  Technology doesn't always work, things break or accidentally get taken in a swimming pool or any number of scenarios and you have to use the "old fashioned way".  I'll be glad that we are proficient at the old fashioned way when we need it but I'll be glad to have the new innovative technology too.  I understand we have to WAIT and HURRY UP and WAIT some more.  There is a difference between understanding and being at peace with your knowledge though.  I'm anxious to keep making the best decisions for our son and it may not be as dire as we perceive it to be but we want to ensure our choices are giving him all the opportunities in life.  Good diabetes management is what we can aim for and advancing technology can help considerably.

It isn't easy to wait and in our age of instant gratification it is reminding us that we have patience and that things happen in their own way and their own time.  It isn't easy to hurry when you are tired and worn down and there are no vacations from diabetes management.  You can't just take a day off or sleep in on Sunday morning.  We're doing okay with it all.  N is thriving right now especially when we look back with our new 20/20 hindsight at how he was feeling in the weeks and month before his diagnosis.  HURRY UP...WAIT  of course we will continue to do both to the best of our ability for as long as it needs doing.  Thankfully we have a great team and strong supports and loving friends and family.

No comments:

Post a Comment