The Dexcom Saga Has Ended. (Hopefully)

We received Angelina’s Dexcom via FedEx on January 21st. Hooray!!!  Went through the quick start guide and watched the tutorial while putting in on her first sensor and everything went really well.  It took a bit more force to push the transmitter on with the little clip thingy than I was expecting, which means that I also pinched her skin harder than I should have and she yelled at me.  However, the process was pretty simple and not so painful (aided greatly by EMLA cream).  Dexcom was up and running 2 hours later and we started the beautiful, beautiful data stream.  Of course, diabetes decided to play dirty that night and she was reading about 300 at midnight.  Fingerstick says she’s 260ish, I think?   Okay, it’s only been 6 hours since it started, we’ll chalk this up to first 24 hours adjustment period, still within 20% at those high of numbers.

And then Dexcom continued to alarm high every 2 hours throughout the night.  We used the enlites back in November and one of Ang’s complains was way too many alarms (especially false ones) so I set the Dexcom up with very conservative alarms – 75 for lows and 300 for highs with no fall or rise rate alarms.  I also have her high snooze set for 120 minutes since her active insulin time is 2 hours.  So, every 2 hours that night I got woken up by Dexcom, got up, did fingerstick, gave corrections.  This may sound like a bad thing.  But it was WONDERFUL!!  Not so much that she had a continually stubborn high overnight, but that the Dexcom actually woke me up, and not only that but the furthest it was off after that midnight reading (which I re-calibrated for) was 9 points!   At blood sugar levels of 300+ being 9 points off at most is AMAZING.  Because, seriously, even with her meter (which has a 15% accuracy rating) when her blood sugar is that high, 2 consecutive fingersticks in the same time period may be off by more than 9 points!  I was amazed!

Our experience continued like that and I cannot sing the praises of the Dexcom highly enough.   And then, on day 7 I get a phone call from Angelina at school.  “Mom, something is wrong with the Dexcom.  It says ‘call technical support’ and has an error code.”  At this point I can hear the thing alarming (really loudly!) so I asked her if she could go into the menu to shut down the receiver.  But, apparently when there’s an error you can’t do ANYTHING, so I had to go to school.

I called Dexcom and was directed to reset the receiver.  It vibrated and then continued with the error screen.  At which point I was informed they would overnight us a new receiver.  A week after we got the first one.  Seriously.  I sadly took the receiver home with me and felt a sense of panic that Angelina wouldn’t have it the rest of the day.  Especially since the day before she had a low of 65 at 1:45 in the afternoon and only knew about it because of the Dexcom.  If you’ve read my previous post about what’s happening at school, then you would know that the nurse has decided that Angelina no longer needs an end of the day blood sugar check since “she’s usually high at that time” and those checks will no longer be done after Jan 31st.

So, that was Tuesday.  I took the receiver home and about an hour later decided to try to see if I could reset it again.  It worked that time, so I called Dexcom and was told they were still going to send a replacement since it shouldn’t be doing that and the fact that it wouldn’t reset earlier was concerning.  When Ang got home from school I went ahead and reconnected her and readings seemed to be pretty accurate.  Of course, she was high because at the end of the day check she was 130 (which is pretty great for her!) and the health tech decided that was too low for her to go on the bus with.  Rather than calling me, she went ahead and gave her a snack and a juice.  She was 220 when we got Dexcom back online.

We went out for dinner and she had a cheeseburger and french fries from Red Robin.  I didn’t think much of it until a couple hours later when her BG started climbing.  I did some correction around bedtime and dexcom showed that she was starting to come down a little.  I went to bed and figured it would wake me up if she went higher.  Well… I woke up a few times during the night and peeked at the Dexcom, which showed she had drifted down and was pretty close to target so I just let it be.

Wednesday morning I got up and Dexcom said she was 169.  Fingerstick said 250.  If trend graph was to be trusted that meant that she had been around 75 pts higher the entire night and actually had gone over 300 at some point, but dexcom didn’t register it.  I decided to pull the sensor and send her to school without it.  Fedex delivered new receiver around lunch time!  I then got a phone call at the end of the day that Angelina’s blood sugar was 104.  I said that was fine, but Angelina insisted that she felt like she was dropping so she had PB crackers (with insulin) and got on the bus.  Of course she was pushing 200 again when she got home.

Then we got her new sensor in and new receiver all hooked up and life went back to our new normal.  This new sensor doesn’t seem to be quite as accurate as the last one, but it could just be new sensor jitters and it hasn’t learned her yet.  Looking forward to smooth sailing from here on out. (At least until we have to deal with Edgepark to reorder sensors)

Let’s Pile On Some More Frustrations

I think I’ve posted before about my experiences with Angelina’s school.  They agreed fairly reasonably to the 504 Plan that I wrote with only a few minor changes.  However, they have been totally nit-picky about the doctor’s orders and what to do about situations that aren’t specifically written into the plan.  The doctor came up with the solution, which was to write into the orders “Please call mother if any unusual circumstances or questions. she is authorized by me to verbally override these written instructions when special unforeseen circumstances arise”  Well, we have had some “special unforeseen circumstances” arise, which involved a particularly stubborn high that lasted around 24 hours starting Monday night into Tuesday afternoon.  We did a site change Tuesday morning before school and did correction, but numbers remained high and rather than pick her up from school I told her over the phone to do a temp basal.  We had run a temp basal for a while the night before with some success, but as soon as we turned it off she went right back up into the 300’s, which is also where she spent most of the morning on Tuesday.

We had a meeting scheduled this morning  (as requested by me back in December before winter break) and in attendance was the health tech, the district nurse, the district nurse supervisor, the teacher, the assistant principal, me and Angelina.  During the course of the meeting the district nurse supervisor essentially told me that they are not allowed to take orders from parents, only the dr, and if it’s not written in the dr’s orders they can’t do it.  They also denied Angelina the option of checking her blood sugar in the classroom, even though in the dr’s orders it says she is capable of independent management of her care except for calculating her insulin dose, and even that is just with supervision (she basically needs someone to double check her math and log how much insulin she’s giving herself).  Which, mind you, isn’t even really necessary because her pump does all the calculations for her and the tech essentially just writes it down, it’s more just so she has to go the office at least once a day to check in.

So, I told them (again) that I would like to see her being more independent as I think that it will solve some of the issues they are having with her being not so nice when she has to come into the office.  They refuse to budge on this issue and instead have decided that her afternoon check (before her hour long bus ride on a bus where the driver doesn’t know what to look for or what to do) isn’t necessary, so that will cut down on their involvement.   The nurse supervisor’s reasoning?  Their other diabetic students don’t check in the afternoon before getting on the bus.  And since apparently they can’t take directions from me on what to do in situations that aren’t clearly outlined in the dr’s orders they are also no longer going to call me unless her blood sugar is below 70 or over 300.

They also will no longer agree to do correction insulin outside of lunch time, even though that was another thing I fought with them about at the beginning of the year and had the dr write into the orders.  However, the nurse supervisor took the dr’s wording “Insulin for correction OR as determined and given by parent: Humalog (correction factor is 125)”  to mean that the “and given by parent” means that I have to physically give the correction, not that I give the DIRECTIONS for the correction, which is what it was actually meant to say as discussed with her dr when I had her write it into the orders.  So then the nurse supervisor says… wait for it “We don’t give extra correction with our other diabetic students.  Why do you want her getting extra correction in the afternoon anyway?”  I dunno… maybe because if her blood sugar is high it shouldn’t be?  And it’s not going to go down on it’s own.  The orders do say not to give more often than every 2 hours, which is not even the issue, and again, she’s on a pump which automatically calculates whether correction is needed based on active insulin and blood sugar levels.  Because the nurse supervisor’s next comment was “The doctor didn’t even give us a sliding scale for correction anyway.  She has the correction factor here but not at what level to give correction at.”  Except on the next page of the orders it gave the sliding scale and it started at 150.  And again… pump calculates everything. And those rates, ratios, factors change in the pump.  I’m not going to have the dr write new orders all the time because a dosage rate changed when it doesn’t really make a difference as far as the school goes.

And… I have been considering homeschooling Angelina.  I joined a local homeschool group back in November and we have been attending weekly park days with them to get to know some people and get input from others who are already homeschooling.  I’m not really ready to start her and David and I agreed that if we did it it wouldn’t be until the fall so she could finish out this school year, but after this meeting today I am ready to withdraw her.  David is worried about how the stress of being home with her all day every day and trying to actually teach her is going to effect me, but I can’t say that I’m not already stressed out with school, even though she’s in public school currently.  It will be an adjustment, for all of us, but I think the most stressful part for me now is not knowing what’s going on at school.  Or getting 10 phone calls because she’s not cooperating, and then finding out she’s not cooperating because they are doing something wrong and she knows it.  She isn’t the most communicative child and so she will often just “shut down” instead of using her words, especially if she is challenged.  Of course, the challenge with that is that she can also be manipulative and will say definitively whatever needs to be said to get her way.  It’s hard to tell when she’s actually telling the truth and when she is just trying to get her way.

Nothing to See Here. Except Venting. About Dexcom Saga. Again.

May I just start this post off with a “iq4yt8f7ady6v87viuh24o8tyg86GUFDGUYOF6B@#$%^ytytr%^&*uuyf&”.  Okay. Thanks.

Now, on to the story.

Last week we finally seemed to have made some progress in finally getting the Dexcom for Ang.  Meaning, I spoke with some other people at Edgepark and they were able to finally manually fax the papers to the endo’s office and… *gasp* the endo’s office received them!  Twice, even!  Of course, what was faxed was supposedly a cover sheet the contained the real reason for the fax – which were the item codes that are supposed to be electronically submitted to the insurance for the prior authorization.  And apparently the second page of the fax (incidentally the only page that wasn’t the cover page) was a “Doctor’s Orders” type page.  Well, the endo filled out the dr’s orders and faxed it back to Edgepark on Thursday.  On Friday I get a call from our Edgepark rep letting me know they received said dr’s orders, but that they already had them from when they were forwarded from Dexcom three weeks ago.

Of course, that made me wonder why they would have faxed a blank dr’s orders page in the first place if they didn’t need it.  I chalk it up to people not knowing what the eff they are doing, which seems to be the order of things with this whole ordeal.  Of course, the endo is only in the office on Thursdays so any additional thing I need from her was not happening.  So I asked edgepark rep “What do you need?  What was faxed that needed to be filled out if not that?”  And her response was quite epic. “There isn’t any more paperwork that we need.  We are waiting for the insurance authorization.  The dr has to submit the dx code and item codes to the insurance to get the authorization and then the insurance will notify us that it has been authorized.  The codes should be, most likely, submitted electronically through the dr’s office directly to the insurance to get the authorization.  The codes are listed on the cover sheet of the fax that was sent.”   DOH! *facepalm*   All this time wasted waiting for some stupid fax, when it’s not even necessarily needed.

So, I ask Edgepark rep “Can you please call the endo’s office and tell them that?  The nurse’s name is _____.”

EPR: “I tried calling and spoke with ________ who said she would transfer me but I get getting a voicemail and have not received a return call.”

Me: “Okay.  You need to speak with _____.  I will also try calling her to tell her what you just told me that the codes need to be submitted and dr shouldn’t even need to do anything.”

EPR: “Okay, I will also try calling her again today as well.”

Me: *Calls endo’s office to speak with _____.*

Me: “Hi, I need to speak with ____ regarding XYZ thing I have already told you about the last 12 times I’ve called in the past 2 weeks.”

Receptionist: “Okay. Please hold.”  *hold music* “Hi, Jessica, I also have _____ from Edgepark on the other line for the nurse.  The nurse says she wants to speak with you first then she will speak with Edgepark rep.”

Me: “Okay, great!”  *transferred* “Hi, _____, I spoke with Edgepark and was told that you just need to submit codes to insurance for auth, no fax needed, although codes were supposed to be on cover sheet of fax that was sent earlier this week.”

Nurse: “We did get those faxes and the dr filled them out yesterday and sent them back.”

Me: “Yes, I know, she emailed me.  The problem is is that was not the insurance auth, that was the RX, which edgepark already had.  This is different.  Codes need to be submitted electronically.  _____ from Edgepark is on the other line and that is what she just told me.  She will tell you about it.”

Nurse: “Okay, I will talk to her and we will get everything straightened out.”

Later that afternoon….

Me: *gets phone call while at Ang’s therapy appt* (Always seems they want to call me at Ang’s therapy appt at 3:30pm on Friday afternoon when you know nothing is going to happen the rest of that day and they will forget by Monday morning)

Nurse: “Hi Jessica, I spoke with edgepark rep this morning and discussed the insurance auth.  I then called insurance IPA and this auth has to come from PCP, not endo, so I will fax the auth info to the PCP and they will submit it.”

Me: “Okay, but PCP doesn’t handle diabetes and didn’t even know she had diabetes when we saw him last.  He probably doesn’t even know what a Dexcom is.  Can you please call and talk to him or his nurse and explain and help them?”

Nurse: “Yes, I probably won’t be able to get through to him but I can tell his medical assistant.  Once they submit it it should take about 3 days, or if he marks it as urgent it will be reviewed within 24 hours”

Me: “Thanks.  I will try to contact them as well to make sure they know what is needed.”  *hangs up*


So, we go through weekend… I am optimistic (I don’t know why) that things are looking up and finally maybe this will be over with.

Now, it’s Monday morning.  I call PCP office, get put on hold forever.  So I hang up and decide to call insurance to see if they received auth request.   Of course not.  Nothing.  I explain the situation and how RX is from endo, but now must be submitted by PCP who has no idea about diabetes device as far as I know.  Nice lady at insurance says “Well, the PCP should be receiving periodic updates from the specialist so he should at least know that she had diabetes.  And he would have had to fill out the initial referral to the endocrinologist, so he should know she has diabetes”  I try to explain that, yes, his office does probably receive periodic updates, but not like he reviews her chart on a regular basis if she isn’t there for an appointment.  OR that he was on  vacation when she was diagnosed so she was diagnosed, seen and referred to endo by a different dr at the same clinic (where there are like 15 drs).  And, yes, she has seen him once since diagnosis and we got shocked and awed “Since when does she have diabetes?” when he sees Humalog on her current medications list.  So, no, I don’t think he is going to have any clue about Dexcom or what and how to submit authorization all on his own without coaching from endo or patient’s caregiver (that would be me).

I thank nice insurance lady for her time and hang up.  Call back PCP’s office because it seems, yet again, someone is falling down on the job.  Get through pretty quickly and speak with receptionist.  She pulls up Angelina’s file and sees notes from endo nurse on Friday.  Says it looks like endo nurse was waiting for fax from Edgepark so she can send to PCP office, but after quick check with medical records, no fax received.  She suggest I call back tomorrow because endo is at PCP office on Tuesdays and maybe they can get things figured out and get insurance auth request sent off.  No better help for PCP to fill out Dexcom request than endo herself, right?  Receptionist concur if endo is on the job, endo will get it taken care of.  She is the very thorough and get things done type of doctor.  However, they do not have fax.  Hung up on must have fax, even after I try to explain that fax not needed from my understanding, only need to electronically submit codes.  Suggest I call endo nurse today to find out what happen with fax?

So, I call the endo office and ask for endo nurse only to be informed she is not there today. What!?!  Figures.  Speak with different receptionist than other 12 times and explain that endo nurse was supposed to possibly, maybe have gotten fax on Friday and send to PCP office?  Receptionist read endo nurse’s notes and says “From her notes it looks like we never got a fax.”  I then try to use “Well, it’s just the codes that need to be forwarded to PCP and PCP needs to submit codes to insurance for auth.  It was supposed to be on the cover sheet of the faxes endo nurse confirmed she received earlier in the week last week.  No new fax needed, should be on prior faxes.”  Receptionist insist they did not receive fax on Friday and must have fax.  She can take a message for endo nurse to call back when she return tomorrow.  No good for me.  Then receptionist suggest I call edgepark and tell them to re-fax already faxed and confirmed received faxes from last week.  No.

I call edgepark rep anyway, get voicemail.  Leave manic, half-crazed sounding voicemail with long story about how everything all effed up.  Can she please call me back ASAP?  I will probably never hear from her again.  So sad, no Dexcom yet.

The Dexcom Saga

I will start this post off by saying that I used to work for Liberty Medical Supply in the pharmacy.  I didn’t handle medical supplies, or really even have that much interaction with our patients.  But, when you work for a company you understand the structure and the process.  So, going into this whole messed up situation I have insider knowledge and I have been trying to use my knowledge to help these people help us.  Unfortunately, it hasn’t changed a darn thing, which I can’t say is particularly surprising.  As a bit of an aside, I left my job at Liberty in 2009.  The day after I walked out of there for the last time (which was not necessarily supposed to be my last day) I had myself committed to a psychiatric hospital because I was stressed to the maximum and was suicidal, a big part of which was because of my job.  I had a mental breakdown.  During my 8 day stay I was diagnosed with bipolar disorder.  That place, quite literally, drove me crazy.  A big part of that is the disconnect between departments, the micromanaging that happens within the departments and the quite obvious lack of concern of the people that work there and run the place.

So, now, having to deal with a medical supply company for Angelina I am finding that it wasn’t just Liberty that is run that way.  And dealing with a different medical supply company who is giving me the run-around is bordering on being traumatic for me.  I wasn’t really expecting that.  But, all of that really doesn’t matter to the story, but I feel the need to share because I have a unique, personal perspective going into the situation that follows.

We have an HMO.  When Angelina was diagnosed with diabetes this past March I was a bit apprehensive about having an HMO and dealing with a very medically involved chronic illness.  When I went to order her insulin pump in June, I was expecting to have to jump through hoops to get things approved and paid for.  However, I was pleasantly surprised when we were able to go directly through the pump manufacturer (Medtronic) and they handled everything, including getting the prescription from her dr.  Insurance approved with no issues and we had the pump in hand 10 days after I first contacted medtronic to tell them we wanted to order it.  We get her pump supplies directly from them every 3-ish months and have never had any problems.

When we decided to attempt to order her CGM I, again, was expecting to have to jump through some hoops.  A lot of insurance companies don’t want to pay for a CGM system, especially for kids, because they are expensive and don’t always improve the clinical outcome and control of diabetes.  Our insurance’s clinical policy bulletins (the written criteria they use to decide whether they will pay for something or not) said that in order for them to cover a CGM for a child that the child would need to have experienced repeated episodes of low blood sugar below 50 that required the assistance of another person to treat despite making adjustments to insulin treatment.  While Angelina has experienced low blood sugar in the past, after starting the pump we were seeing a lot more high blood sugars so I thought we were going to have a fight on our hands.  However, after an initial snafu with medtronic about the prescription the insurance didn’t give them any fuss over covering the CGM.

After we returned the medtronic CGM and decided we wanted to get the Dexcom I was nervous that insurance would say no since they hadn’t been reimbursed yet.  So, I called our insurance a week after we returned the medtronic CGM and the person I spoke with called medtronic while we were on the phone and was told that we had returned it and it would take approximately 30-60 days for them to process the return and apply the refund to the insurance.  I asked if that meant we needed to wait and the person at the insurance company said that we didn’t.  They had it on file that the return was being processed and we should be able to order the Dexcom right away.  Angelina obviously already met whatever criteria they required for them to cover it so we shouldn’t have any issues.

A few days later I called Dexcom and was informed that we needed to have her dr send in their certificate of medical necessity, which is essentially a prescription that also tells why the Dexcom is required for the patient.  I got an email from the dr on Dec 19 letting me know that she faxed in the CMN and we should be all set.  Two days later, on Saturday, I got an email from a rep at Dexcom letting me know that our insurance requires us to go through Edgepark Medical Supply for the Dexcom and supplies as Dexcom is not contracted directly with the medical group.  I was informed that Angelina’s prescription and all of her information had been forwarded to a rep at Edgepark and I should hear from them shortly.

I decided to go ahead and email the Edgepark rep and let them know that Angelina had an existing account, even though we hadn’t ordered anything from them.  I made sure that I put all of her current insurance information in, etc.  The only issue I had is that when I searched for her endocrinologist they didn’t have her info at the clinic we see her at.  The only office info they had for her was for the diabetes clinic at Children’s Hospital Los Angeles, which is not in any way even affiliated with the clinic we go to, which means CHLA has no record of Angelina as a patient.

So, in my email to the rep I mentioned this information and provided the correct office information for the endocrinologist.  Mind you, this was on December 21st.  I got an email auto-response stating that the rep was out of the office until Dec 23.  Edgepark was also closed for the holiday on the 24th and 25th.  On Dec 26th I decided to call the rep since I never received a response to my email or a phone call.  I got her voicemail and I just asked for her to call me back.  Two hours later I finally get a call back and she tells me that the insurance was verified and what our coverage is.  But then she tells me that they have the RX from the dr but they needed logs and blood work results and they had faxed the request to the dr’s office and were just waiting for a response.

I called the dr’s office to see if they had received the faxes and, if so, if they could get them sent in that day since I knew the dr is only in our clinic on Thursdays and I wanted this Dexcom ASAP.  I got the run around at the dr’s office and had to leave a message with the receptionist, who very obviously had no clue what I was talking about.  The nurse called me back a little later and said that they hadn’t received any faxes and besides which the dr wasn’t in until the following week due to the holiday.  I pulled up the edgepark website and Angelina’s profile and much to my chagrin saw that the dr’s office information they had in her profile was for her office at CHLA.  I called the Edgepark rep back and got her voice mail again.  I left a message stating that they were sending the faxes to the wrong dr’s office and left the correct phone and fax number.  I also emailed the information to the rep, just to be sure she got it.  I didn’t hear anything back.

The next day (Friday, Dec 27) I received a call from a different Edgepark rep calling to tell me that they had everything that they needed, but when they called to submit the authorization to the insurance company through the IPA they were informed that Angelina’s coverage was terminated as of Nov 1.  That meant that I now had to call the IPA directly to get things straightened out.  I called them, and the person I spoke with went over all her info with me and confirmed that they were showing her coverage was terminated.  Funnily enough, we had just received Angelina 3 months of pump supplies the week before this phone call.  And, when I got the phone call we were sitting at Angelina’s therapist’s office.  Her insurance was working just fine.  The rep at the IPA said they would put a rush on it and get things straightened out.  Well, I never heard anything after that and it was after 5pm on Friday.

Monday morning (Dec 30), first thing, I called the IPA to find out if they had fixed the problem.  The person I spoke with thought I was crazy when I asked if the coverage was now showing it was active.  Her response “The coverage has been active since November 1st.  I’m not sure what you’re asking for.” (!!!)  So, I called back the 2nd rep at Edgepark to let her know the insurance was straightened out.  She then informs me that everything is not ready to go, but that they have to fax insurance authorization forms to the dr’s office that the dr must submit to the insurance to get authorization for the Dexcom.  I told her that they had the wrong office info in their system and gave her the correct phone and fax number and she said she was faxing it right now, while we were on the phone.  She said that once the dr submitted it to the insurance it should take 3-5 days for the insurance to make a decision and they would let edgepark know if it was authorized.

I didn’t hear anything for the rest of the week.  I was hopeful that the dr’s office had received the fax and that the dr had filled it out and submitted it on Thursday.  So, I gave it a few days for the insurance to hopefully review it.  Then yesterday (Jan 7) I decided to call edgepark and I got our reps voicemail.  I left a message saying I was just checking up on things and to please call me back (which I still haven’t gotten a call back).  At that point I decided to contact the IPA and see what the status was.  If it was approved I was going to call Edgepark and let them know to move things along.  Well, imagine my surprise when the IPA says they have not received any authorization request for anything.

So, now I’m getting a bit ticked off.  I call the dr’s office and the receptionist won’t transfer me to the nurse, which I asked for by name and I know is the person I need to speak with.  The receptionist tells me they don’t have any record of any faxes in Angelina’s file.  I finally call Edgepark and instead of trying to reach the rep I had been working with I just speak with someone in customer care.  This person tells me that they still have the CHLA office info for the endo but she will update the file to reflect the correct office.  We go over the information as she’s putting it in and then I hear “Oh.  That’s weird.”  She then tells me that she tried entering in the information that I gave her but then as soon as she hit enter it all defaulted back to the CHLA information and won’t let her update it.  She instead gets all the office information and enters it into the special notes in Angelina’s profile and says that she will have to transfer me to the prescription department and that someone there will have to manually fax it to the dr’s office with the info in the special notes.

I get transferred to the prescription dept and am told that they can’t do anything since it’s for a CGM and that it has to be handled by the CGM dept.  However, everyone in the CGM dept left at 5pm (it was 2:30pm PST – but they work on EST, so it was 5:30.  Did I mentioned I started my call at 1:45pm and was on hold for a while?) and I will have to call back.

That brings us to today.  I called Edgepark at 8am PST, which is 11am their time.  I asked to be transferred to the CGM dept.  I spoke with a different rep and when I told him that the insurance auth forms needed to be faxed to the dr’s office because they had not received them his response was “It looks like we have everything we need from the dr.  Nothing needs to be faxed.”  I explained that it was the insurance auth papers for the dr to submit to the insurance and that they needed to be manually faxed because they were not going through the system.  He then tells me that he shows they were faxed to the correct number on Monday, Jan 6.  Well, I tell him, I spoke with the dr’s office yesterday and they haven’t received any faxes so it needs to be sent again, manually.  He assures me he will fax the forms manually.

This is where my experience working at Liberty comes in.  I used to work in the dept that was responsible for faxing and calling the dr’s offices when there were problems  – either the dr hadn’t returned the faxes in a timely manner (the system would fax it automatically every 48 hours) or we had gotten the forms or RX back and there was a problem.  A lot of the time, we had the wrong fax number for the dr’s office and the info needed to be updated and refaxed.  But, sometimes, the info just wouldn’t fix in the computer system.  In those cases, you had to print the forms and actually walk to the fax machine around the corner and dial the fax number with your own fingers and put the paper in the fax machine.  And then, if you were thourough (which, let’s face it, most people aren’t in a grunt type job like that) you called the dr’s office back to make sure they received the fax.  Of course, manually faxing and then following up with a phone call may take an extra 5-10 minutes of your time, and for some people that’s just way too much time to spend on any one person’s problem.  Especially when that rep isn’t getting paid any more money for putting in more effort.  And, in some cases, may actually get in trouble because they took too much time on one person and may not have met their minimum quota for the day.  I know, because working at Liberty I was written up more than once for not meeting my call quota for the day because I actually took the time to resolve issues and show some follow through.

So, here we are – three weeks from when I originally contacted Dexcom and still no Dexcom.  As it stands, if the dr’s office didn’t receive those faxes today and the dr doesn’t see them tomorrow then we have to wait another week before she will see them (assuming they get there eventually).  After that, we have to wait 3-5 business days for the insurance to review and decide whether to authorize. And then, blessed then we may finally get Angelina’s Dexcom shipped.  I’m so over this crap.  I wish I just had a couple grand laying around that I could just buy the darned thing outright.

What has been going on lately?

I never finished my post after Angelina’s cold.  The end of that long, convoluted story (when aren’t my stories long and convoluted?) was that we got her on the medtronic CGM (continuous glucose monitor) starting November 5th.  Insertion was easy, and after the first 24 hours on it a lot of the readings were pretty close to her meter readings.  Of course, the CGM reads interstitial fluid and not blood so it’s considered accurate if it’s within a 20% margin.  Then, we hit day 5 of a sensor that should last 6 days and our entire CGM experience went to Hell in a handbasket.  We set minimal alarms at training so that it wouldn’t be alarming all the time, which can be pretty frustrating when you’re getting used to a new device.  Well, at the start of Day 5 (and by start, I mean 5am) we were getting alarms left and right.  It alarmed that her blood sugar was over 300.  Then it said her blood sugar was going low, then again that it was over 300.  Obviously, her blood sugar wasn’t’ fluctuating that much that quickly (this was all within about an hour) so I tried to restart the sensor as I had seen mentioned in one of the T1 groups that I frequent.  That stopped the alarms momentarily but within a couple of hours it was freaking out again so we decided to remove the sensor and start a new one somewhere else later that day.  

The second sensor was okay.  It never really was as accurate as the first one at any point really.  And we had chosen to insert it on Ang’s backside and it was a bit of a bleeder.  We also found that she laid on it at night while sleeping which caused it to alarm, over and over, every single night.  It also decided to go haywire on Day 5.  We took a day off after that and let her go CGM free.  I have to tell you that those 24-ish hours were torture for me!  In ten short days I had gotten used to looking at it and at least getting some sort of a semblance of an idea of what direction her blood sugar was heading in when we did blood sugar checks.  I never really trusted the thing to give me an accurate number, but at least it was okay at showing me whether she was headed up, down, or holding steady.  

We finally put the third sensor in on her thigh.  She wasn’t happy about that one, but I said “Hey! Let’s try it.”  About 2 hours after the sensor was up and running (so maybe 4 hours from insertion) she caught it on the arm of the recliner and ripped it out.  Quite painfully, I might add.  Again, she refused to put a new one in right away and said she was done and no longer wanted to wear ANY CGM.

So, I dug in deep to some of my groups and reached out to the DOC for help.  One of the moms who I had talked to said her daughter had been using the previous medtronic CGM since 2009 and they had great success with the sensor on the arms.  It was more accurate for them there, it wouldn’t get laid on at night and cause erratic readings and alarms.  It wasn’t likely to snag on the furniture as she walked past.  So… I bribed Angelina to give it another try.

From the word “Go!” the arm sensor was by far the best one yet.  It didn’t give false alarms at night, it wasn’t really in the way.  The biggest annoyance was that Angelina’s pump was the receiver and I kept asking to look at it, which bugged her a bit because it meant I was in her personal space more.  Since we kept having problems on Day 5 I thought maybe it was the transmitter so on the evening of Day 4 I popped the transmitter off and re-charged it.  It was day 7 before we started seeing erratic numbers and alarms and decided to remove that one.

Well, since we had such great success we decided to try the other arm.  For whatever reason, the other arm was the worst sensor yet, aside from the sensor that ripped out on the furniture.  It started out reading over 100 pts different from her meter, and the closest we ever saw it was about 40 pts away from her meter reading.  And then, on the morning of Day 3 I woke up around 5am and went in to check Angelina and the alarm had been going off for an hour that she had a low blood sugar below 40.  Anything below 70 is considered low, and below 40 is really low.  Angelina didn’t wake up to the alarm and I didn’t even hear it until I went into her room and pulled her blanket back to look at her pump.  I did a quick blood sugar check and she was at 95, which is slightly below her target range of 100-150, but still definitely not low and not a concern at that time of the day.  So, I turned off the alarm and attempted to calibrate the CGM to show it that her blood sugar was fine.  

However, even after restarting the sensor it continued to alarm low for over four hours.  I would turn it off and every 20 minutes (the repeat setting we had set at training) it would alarm low again, even though blood sugar ranged anywhere from 95-145.  Finally, we stopped and removed the sensor and I called medtronic to tell them we wanted to return it.  Angelina was to the point that she no longer wanted to wear it.  It had been alarming at school for no good reason because it was inaccurate or had an erroneous reading that wouldn’t be corrected.  She was just done. And so was I.  

So, we sent it back.  The first few days without it were peaceful, but still a little nerve wracking and I still wanted to occasionally ask her if I could look at her trend graph.  I would catch myself and it would be a little upsetting to realize that there was no trend line (not even an inaccurate one) to look at.  So, we decided we definitely liked having a CGM and decided that we would try to order a Dexcom CGM, which is supposed to be more accurate.  It also has a separate receiver which means I can have possession of it and watch her trend line whenever we’re together without having to disturb her.  And, she can wear it in a pouch like she does her pump, so hopefully it won’t get lost when I’m not around.