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.

6 Month Check Up

or check in, or appointment...

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. 

And we're waiting, and we're waiting, and we're waiting

No news on the insulin pump.  I'm bummed.  We heard from the omnipod rep that our insurance is back to approving these prescriptions and she had us contact the pharmacy that we'll need to use to ship supplies to us.  She texted the other day and asked if we have received any supplies and I got my hopes up.  I'd messaged with her at the beginning of the month and she'd told me she had checked our paperwork at Children's and that we were ready for when the update came but...nope.  According to our health insurance there has been no prescription for the insulin pump pdm, pods, or a change in insulin order.  

Ugh!

I'm not surprised but I'm not happy.  I wanted to believe the medical team we met via phone three months ago who said we'd be fine to start on insulin pump therapy but would likely need to take a zoom pump therapy assessment session (they didn't have them yet but they were sure they would be starting them soon since Covid19 had suspended a lot of in-person care).  I wanted to believe the rep from Omnipod that the paperwork was done and we were just waiting for an update to the omnipod.  I wanted to believe just yesterday when I got that text that we should've started receiving supplies by now.  Wanting something is just not enough.  I emailed our endocrinologist and explained all the research and reading we've done and how ready we believe we are.  I texted the rep back and said we've spoken to insurance and the insurance approved pharmacy for shipping.  I, in fact, did talk to several people because I've already found you have to get transferred through several people before you get someone who knows anything about what you are asking about.  

I'm not 100% sure where our hang up is or what I can possibly do to expedite things.  We want insulin pump therapy for our son, he wants it too, we researched and reviewed and tested and chose a pump, we've spoken repeatedly with the insulin pump company, we've tried expressing our desire to our medical team and we've done a lot of WAITING!  

We have about five weeks before we all start back to whatever crazy shenanigans will be our new school year.  Both hubby and I are teachers and both kids are still school-aged.  None of us want to do the thrown-together-emergency-work/teach/learn-from-home again.  Only five weeks and our district hasn't announced exactly how things will be worked out but they have announced some "options".  I do not want to start figuring out a new piece of medical equipment in the midst of all that but I'll do it for N because I believe it is best for his health.  It's just, it would be easier if we could do it now before the **it-storm starts.

I appreciate that we have these great advancements in treatment options for my son.  I'm thankful that he is living day to day pretty much the same as if he didn't have a chronic health condition.  I'm NOT living the same.  I'm harboring my worry and my concern and my advocacy and my frustration and my impatience.  On a positive note, I phoned a friend about my frustrations and she is wonderful.  She told me she reads this blog sometimes though so now I feel weird writing about her.  She's currently waiting and working to get her daughter a G6 so she gets it.  She is jumping all the hoops but the hoops keep moving and so many of the ones you jump don't seem to move you forward or any closer to your goal at all.  What a messed up system.  I'm going to pour myself a glass of wine and I'll raise it to my fellow T1D mom's tonight.  Keep jumping those hoops ladies!

The Waiting Game...Again

So here we are again...waiting.  We are six months post-diagnosis and should currently be eligible for insulin pump therapy which is exciting and we've been waiting for this time but we are currently

WAITING

Our Children's Hospital was wonderful while we were getting our initial diagnosis about providing us information and training and they have been available as we've progressed in our journey and we've made it clear from the beginning that we are interested in insulin pump therapy as we know it will better keep our son in a healthy range.  At our 3 month appointment, held via phone call, we told our endocrinologist that we wanted insulin pump therapy and wanted to do anything we could to be ready when he reached 6 months which is when our insurance company will cover the insulin pump.  At that time we were told they weren't holding classes but maybe they would have them virtually over the summer. Due to the pandemic we haven't been able to attend any training on insulin pump therapy but we aren't too concerned about our ability to learn what we need in a distance model.  

We have done our own reading and research and yes, we've watched youtube videos and read blogs of others with type 1 diabetes.  We talked to friends who have insulin pump therapy as part of their lives. We  narrowed our scope to two devices, got a trial of each device and ultimately chose the one we felt would be the best "first" insulin pump for our son.  We have been keeping in contact with the insulin pump representative in our area and were made aware that our insurance wasn't covering the existing PDM for the pump until their next update and we've been told that the update occurred and insurance will start allowing coverage of new prescriptions for this insulin pump this week.  Fingers crossed but I'm only hopeful, not really optimistic.  I am pleased because this means we will likely get this done before fall but I'm not holding out hope that we'll have the insulin pump easily or quickly.  It took a lot of calling and sorting to get the approval on our CGM so I'm guessing this will be the same rigmarole.  I'm ready and willing to spend hours on the phone and feel that frustration but I wouldn't mind being spared the experience so fingers crossed.

In the nick of time

So our insurance has a specific company we can order our Dexcom CGM supplies from.  Even though these supplies are available at local pharmacies, I have to order them from a healthcare supply company but I can get, according to insurance, 3-months of supplies at once.  

Sounds good right?

Hmmm.  One Dexcom sensor lasts 10 days so for 3 months I get 9 sensors.  90 days of supplies for three months but some months have 31 days in them.  I cannot order new supplies until 12 weeks after my previous order.  I tried to order earlier online but the shipping date was for exactly 12 weeks from the last order.  I called the company this week just to make sure there were no other options and was told it was out of their hands, nothing they could do.  It isn't a large problem but it is an additional stress and we have plenty of stress, full up of stress, no thanks I don't need anymore stress.

So on the day they will send our next shipment we will have 7 days left of our current supply and they say it takes 4-5 days once they are shipped.  So if everything works out we will get the new sensors the day before we need one. 

I asked, not really expecting a satisfying answer, what happens if this sensor fails, or the adhesive wears off and it gets too loose, or the shipment is delayed?  The answer I got was "just give us a call and we'll make sure to ship you a sensor."  Um, you are already shipping sensors and they may not arrive in time but your solution is to ship me one?  I'm tired already of this and I've only been doing it for a week shy of 6 months. 

I'm a member of a type-1-diabetes facebook group in my general region (within 4 hours of my location) so I asked them about it.  I got several "groups" of answers.  

1. You just have to deal with it, work within the system, you can always go back to poking his finger 5-8 times a day and waking up in the middle of the night to check blood glucose levels for the few days while you wait for your shipment to arrive.  It only happens like this every three months. 

2. Pay for a box of sensors out of your own pocket so you have a little leeway. A box of sensors without insurance is over $350 from what I could find but sometimes costco has them on sale in their pharmacy for less a few people told me.

3. Just don't use a sensor for 5-10 days this time around but order on time and you'll be ahead for a while but, just so you know, you will eventually use that time up depending on how many days are in the month and where the weekend falls on your shipping date so you'll have to do this at least once a year.

4. Switch insurance companies.

I appreciate this group, I really do but these are four variations of bend over. That sucks. 

This group is full of amazing people though.  They never post negatively towards others in their shoes.  They never say "you are not entitled to your feelings on this" but they also don't let you wallow in self pity.  They try to lift you up and cheer you on and remind you that you've got this because you are the only one who can do it.  

Many members of this group, who I've never met, reached out in private messages to me.  They offered to loan me a sensor of theirs and trusted me to replace it when my shipment arrived.  They offered to deliver it to my house in the middle of the night if I needed; some of these people were over a two hour drive away. They've been where I stand and they know how it feels to tell your child that we are back on finger pokes for no reason other than that we can't have a sensor a few days before we will need it because insurance thinks we can't be trusted with it.  I guess they are worried we may overdose.  

I'm thankful we have the options we do but frustrated with the hoop jumping.  I will likely look into a new insurance option next fall when our open enrollment comes around and if we switch it will start in January so at least another six months.  It will likely just be a new set of issues though that I will have to learn to navigate.  When to call, who to ask for, how to get things done.  I am super fortunate that I have access to the types of health supplies I do have access to for my son but disillusioned a bit by the process.

So I'll just keep up the fight and know that others are out there making the same phone calls and feeling the same disappointments; connecting themselves with some people online and being thankful that other's hearts and trust is so much greater than could be imagined. It does feel strange to me how one thing can leave me so full of hope and grumpy sorrow at the same time.

And the wait goes on...Continuous Glucose Monitor

Yes we're still waiting.  We've been waiting.  Sometimes patiently waiting and sometimes angrily waiting and sometimes frustratingly waiting.

Our insurance company covers pretty well for diabetes supplies once they decide to cover them.  They take their time deciding though.  We seem to need to do a lot of pushing and calling and submitting again and again the same things.

We were told in the hospital that we could submit for a CGM 30 days after diagnosis.  So we did that on Jan. 9th.  We waited a couple of weeks then called to check on the status.  Nope, we submitted our request incorrectly.  We contacted our endocrinologist and they said they'd get back on it.  More waiting.  Two more weeks and another call but nope nothing going on yet.

About three weeks ago I got a text from the medical supply company that my paperwork was in and they would be reaching out to me soon.  Hooray!  I actually started crying, at work, in front of my coworkers.  What a mess I've become.

So we wait again, for another two weeks.

Then I get a text message from my ex-husband letting me know that insurance informed him that they declined to cover the CGM because there was an error in paperwork.  The thing is...why was he getting information and I wasn't.  The kids are covered twice first by me and then by him.  We both have the same insurance provider.  His insurance is the secondary coverage.  So I call the insurance company again hoping that the secondary coverage wasn't going to be kicking in any help but that the primary coverage had approved it.  Nope.

It was declined because it came from the endocrinologist and not the pediatrician (the pediatrician is in network and the entire Children's Hospital and all their staff are out of network).  So then I ask why my ex husband received this information as the holder of the secondary insurance but I wasn't contacted.  So they checked "my" account and told me the phone number they had on record was his.  Ummmm.  We've been divorced for 9 years!  Last year I had the same insurance company for my kids and he was unemployed and had no insurance for the kids.  We have open enrollment every year in Nov. and I updated my information but stayed with the same company.  We did both go into the new school employee benefits network since I have always been a teacher and he has recently become a teacher.  So now I have someone researching my account to see how his information landed on my account - it wasn't just his phone number either, it was also his address and he has been receiving all of my mail - not just for the kids but also my medical information!  Of course all this is a different battle so...

So armed with my new information, that we need the pediatrician, I give his office a call and talk to a nurse.  I LOVE NURSES!  I have always loved nurses. Lots of relatives are nurses.  Nurses have always been kind and knowledgeable. My son's pediatrician is awesome but he wants my son to be seeing a specialist for his diabetes.  The nurse and I talk it through and although they NEVER do these types of requests they are going to figure it out and call me back.  They are going to contact his endo. and get all the information on what she is recommending and then they will submit.

I get a call from her the next morning that they have everything ready but they don't know where to send the request.  Hmmm I don't know.  So I call the insurance company.  I explain that we need a pre authorization and my pediatrician needs to know where to send the paperwork.  But they don't understand and ask a bunch of questions then finally decide what I need to do is go pick up the prescription from the Dr. and take it to a pharmacy 100 miles from where I live because that is the nearest affiliated pharmacy.  At this point I would've driven the 100 miles there and back but  I know that won't work so I tell them to put me up to a supervisor.  Supervisor thinks I should talk directly to the medical supply company but I explain to him that we already did that and there was no pre authorization on file with insurance so it got declined.  After talking to him for a long time he has me talk to someone else.  This went on for 3+ hours.  No one could just give me a fax # or agree that there was any such thing as pre authorization although I know there is for my insurance since I needed it recently for my older son.

At one point my insurance company said they knew who I needed to speak with, put me on hold, then when the line picked up I was talking to a representative from the medical supply company.  Unfortunately they couldn't do anything without the insurance company having the pre authorization.  So I had to call the insurance company back but not before I burst into tears at the poor medical supply company rep. ah Kristin, she was very sweet as I completely broke down and there was literally nothing she could do to help at all except listen.  I finally had to give up for the day.

This morning I called the pediatrician's office again and was surprised to get an update.  The medical supply company reached out to them and gave them a phone number and fax number for the pre-authorization department at my insurance company.  So they called in and spoke to multiple people and got a lot of "conflicting" information.  First they were told that my insurance wouldn't cover a CGM no matter what a physician recommended.  Then they talked to someone else who told them they couldn't make the request it would need to come from the Endocrinologist.  Then they were told by another person that it was fine that it came from the Endocrinologist but they always have to verify that the primary care physician agrees with the treatment and they'd called but found out my son doesn't have a diabetes diagnosis so the Dr. declined the order...more on this in a minute.  Finally they reached someone who said they would review the request and sometime in the next 2 weeks the authorization department would decide but if they did agree to cover it we should know our deductible applies (FINE).  To hedge all the options my son's pediatrician & amazing nurse and staff decided to do ALL THE THINGS.  They called, they faxed information in, they called the Dr. that had rescinded the order and explained the situation in case he got called again, they called our Endocrinologist and had her fax in another order as well.  WOW!  Fingers crossed.

So I called insurance again today to see if there is anything else I need to do, to make sure that Dr. that rescinded the order isn't listed anywhere on our file, and to make sure that there would be notes on our file that we were actively working together with our pediatrician and endocrinology team to get this device.   The representative I spoke with today was really helpful, she was thoughtful and tried really hard to address my concerns.

First she figured out that the Dr. that had been contacted and rescinded the order was the physician from the urgent care clinic that had diagnosed my son as having a sinus infection while he was really in diabetic ketoacidosis; we saw that Dr. in an urgent care clinic and within 12 hours my son was on a helicopter being transported to the children's hospital after we took him to our local hospital emergency room.  That same physician never called us back with the results of the bloodwork he had ordered on my son.  She assures me that she left very specific notes regarding this physician and made sure his name is NOT listed anywhere in our file except in that note.  He shouldn't be contacted again regarding my son.

She figured out how my ex husband's information was being updated into my account.  Again she left very specific notes in the account about the status of the children and their coverage as well as locking their address & phone number so they cannot be changed except by me.

Finally, she called the endocrinologist and pediatrician for me and made sure they were each resubmitting the request to the correct fax number for the authorization review department.

I want to believe that she did all these things and that early next week I will hear that we were approved and that our CGM is on its way - finally.  I want to believe but I just can't really.  I very badly want her to have come through and for things to work out.  But if not, I am ready to call again, spend hours on the phone, pester anyone and everyone, and keep going until we get the best possible care options for our son.

If you are out there, fighting this battle too, you may never see me, we may never speak, we may never meet, but I stand with you and I know you stand with me.  Keep going.  Insist on the best care for our children.