Thursday, May 24, 2012

CGMS? Yes please!

A lot of insurance companies do not routinely cover Continuous Glucose Monitors (CGMS) for children with diabetes.  It's so absurd really, and it frustrates me that parents have to fight so hard (submit months of BG logs, get doctors letters) to get this valuable information in their hands...or do without it.

A CGMS is a sensor that a person wears.  The sensor is inserted into the interstitial fluid under the skin where it reads the blood glucose levels and wirelessly transmits them to a receiver.  We chose the Medtronic pump because it has the CGMS receiver built into the pump itself.  I already knew I planned to fight for this technology.  The sensor reads the BG levels every 5 minutes 24 hours a day.  We will still have to test Seth's BG 4x a day via finger prick to calibrate and test for accuracy...nothing is perfect.  But the information this will give us is so valuable, it is worth it.

Let's talk about that for a moment.  Right now we test Seth's BG 8-10x a day.  But we only get a singular reading and it doesn't give us any context unless we test multiple times within a certain time limit.  For example a 70 means Seth's BG is good and in range and during the day, I'm okay with that.  But at night, I am uncomfortable sending him to bed like that because I don't know if that is a stable 70, a 70 that is heading lower or a 70 that is going higher.  So I have to treat it like it is "low".  BUT, with the CGMS, if calibrated and using an accurate sensor, it will show me if it is a stable number, a number that is heading down or a number that is heading up.  VALUABLE information to help me keep Seth's numbers more in range.  I can make more minute corrections to keep him more tightly in range.

The more you can keep a diabetics numbers in range, the more you can help prevent potential long term damage.  I will do anything I can to help prevent this.

The conversation I had with my rep at Medtronic went something like this:

Me:  I am interested in ordering the CGMS system with our pump.

Medtronic:  We generally recommend ordering the pump first and once you have received that, then ordering the CGMS system, because insurance generally fights those a bit more and we would hate to have your pump delayed for the CGMS.

Me:  Sounds good, lets order the pump.

I called again the day they shipped the pump

Me: I am ready to order the CGMS system for our pump.  What is the process for that?

Medtronic: We will put the request in with your insurance.  They will then have 14 days to make a decision.

Me:  Perfect.  So here is what we are going to do.  We are going to make the request.  If they do not approve the request for a CGMS, then the day after we receive the denial, we will make another request and we will continue this cycle until they say yes.  If they need anything from me to help make this decision, please let me know so I can send it in.  I do not want to hold this process up.  They have met a bulldog who is fighting for their child.  I will not stop until we have is that important to me.

Medtronic:  We will submit the request right away and be in touch as soon as we hear.

3 days later my rep called me and said that my insurance had approved the request.  They agreed this was medically necessary for diabetes and as such would cover it.

I welled up and my jaw dropped.  I couldn't believe it.  I was prepared to fight and battle for this.  I wasn't prepared for a simple, we couldn't agree more.

So, we go in next Monday to be trained on the insertion of the CGMS sensor.  The needle is a lot bigger than the pump, so we got some prescription numbing cream.  Wish us luck!

Wednesday, May 23, 2012's on!

We are now about 3 weeks in to our pumping adventure and haven't had any further issues.  Infusion set changes have become second nature for us.  I watched as the weight that had descended on my son, lifted from his shoulders.  He feels as normal is it is going to get for a D kid now.  I'm not going to lie and say it's all peaches and cream , he still has D and D still bites. 

Seth HATED the shots.  I don't even know how to fully convey how deeply he hated the shots.  He did what he had to do to keep himself alive, but he dreaded it.  Loathed it.  Chose not to have a snack so he wouldn't have to cover for it with a shot.

When we did the saline trial, Seth was nervous about the insertion, but agreed he would try it ONCE.  I prayed it would go well.  After the insertion, Seth looked at me and he was all smiles.  "I can do this mom.  It felt like a finger flick.  It's nothing compared to shots."

On a side note, school ended last Friday for my kids and I am cleaning up the library and rearranging computer labs this week.  My summer officially starts this Friday at 3pm and I am SO ready.

Wednesday, May 9, 2012

Stronger: SCH

I received the link to this AMAZING video from a friend of ours who has a son at Seattle Children's Hospital.  They've actually been living in Seattle now for 5 years fighting the beast that is Cancer.  My heart breaks for what they have endured, are enduring and will yet endure.  But they are parents, it is what they do.  There is no other option. It is the childrens hope that this video will go viral.  Please share it's message of inspiration with others.  It doesn't matter what beast you are fighting, the message is universal and heartfelt.  These children are stronger than you can imagine.


Thursday, May 3, 2012

Infusion Change

Monday, I took the day off from work and Mark slept through, Seth and I attended pump training at our local Diabetes Education Center.  We love Cindy the RN there who works with us.  She went over everything with us.  I had done a few of the computer classes before going in and then she monitored me hooking Seth up.  It was a piece of cake and the next 3 days were a dream.  Seriously...I am so sleep deprived now that we are doing a midnight AND a 3 am check to make sure his basal (baseline) rate of insulin is correct, I feel like I am living in a dream.

Seth was very happy, and that's what this is all about.  Every three days, we have to change the infusion set that is in Seths body and put new insulin in the reservoir for his pump.  Today was the 3rd has not been pretty. 

I had the book open and was reading the directions out loud to myself as I did it, it all looked good so I sent Seth off to school.  He personally loved that I had found out to put baby oil on the old infusion site to make for easier removal.  Score one for mom!

Fast forward two hours later, the nurse calls me to say that his BG is 295 (Seths range is 80-150).  Hmm.  So, I find the page in the book that tells us to bolus (give extra insulin) for it and check again in an hour.  We have Seth do this.

An hour later she calls me and says he has come down to 275.  The Diabetes center said that was good, that I probably didn't get all of the air out of the hose.  My instructions were to check him again at lunch in an hour.

He calls at 12:15 and he is 225.  I'm feeling pretty pleased with myself.  I managed the site change AND I troubleshot pretty danged good...WRONG.  At 2:15 I get the call he is 324.  What the what!  Seriously?  So we followed the procedure again and I am feeling extremely relieved that we already had a doctors appointment set up for 4:15 today.

What was really hard is Seth called me when he got home from school and vented/yelled at me that I did this all wrong.  Trying to have broad shoulders and will explain when we are together that this happens and is a small bump in the road on our D journey.  I know we'll get it figured out.  Bed...I just need to crawl into my bed and start the day over, but first I need to set my alarm.