This little piece of medical technology has entered our life with a bang. As in, it started alarming as soon as we placed it. No sense it letting such great technology go to waste, eh?
Yep, it's Benji's long awaited continuous glucose monitor. Made by a company called Dexcom, it is a meter that gives blood sugar readings every five minutes. We went from 10 finger pokes per day to 2. They are FDA approved for diabetic adults. We were first told about them by one of Benji's home health nurses (thank you Tahirah!), questioned his endo in Minneapolis about them and got a big thumbs up, and when we sent the company a bunch of Benji's records they stated that they could endorse it for a hypoglycemic three year old. Benji's pediatrician was fully behind us on keeping him healthier and avoiding tormenting him with repeated finger pokes and the cruddy feeling that goes along with hypoglycemia.
With a great big "POO ON YOU" to Coventry Health of Kentucky we ended up paying out of pocket for this very expensive little life saving device. At one point they stated that being he is so young that he should stay hospitalized being he has so many problems with hypoglycemia. Ummm...are we suppossed to keep him inpatient until he is 7? Coventry had stalled and stalled out the authorization process until just days before our policy ended. At the last minute they stated that they would pay in full for the device after a 72 hour trial through our clinic. In fact the pediatric nurse case manager at Coventry promised that. I have a recording of her call. We didn't really have 72 hours to get it done but they did a 48 hour or so trial with a different device by a company called minimed. The results of the trial showed pretty much what we already knew: blood sugars in the 40s, lower readings at night when asleep, slow response and rebounds to sugar given through the Gtube. None of it normal, none of it yet explained in full. The policy terminated on Memorial Day when Coventry was closed. The following day I was told that there certainly had been some concerning low blood sugars on the trial but it would take weeks for a decision to be reached on payment and we had already had our policy end. And they were so, so sorry. Sure. Right.
The fact that the report rolled in around the same time as Benji's less than stellar cognitive evaluation from the school district made it pretty clear to Glenn and I that we needed to pursue a better way to prevent him from having such low blood sugar readings. Plus we had lost track of how many times he had been admitted for hypoglycemia. 6? 8? How many times had we been to the clinic for the same reason? How many times has he had low blood sugar when on IV fluids when in theory that should not happen if this were only an absorption issue?
Thank goodness for the timing of our tax return because it was expensive and the monthly sensors are also expensive. (As in they cost the same as our house payment!) None of it is paid by Benji's secondary Medicaid as it turns out there is just not alot of three year olds with pancreatic insufficiency and hypoglycemia running around out there.
Thank goodness for relatives who regularly help us out. They know who they are.
Thank goodness we were not in a situation where we had to rely on the decision of an insurance company to decide what our child needed to be healthy and safe. I don't believe that they ever intended to pay for this equipment. They knew our policy was ending and just kept stringing us along.
Thank goodness we now have some hope that Benji will never have another seizure due to hypoglycemia.
Being we were paying out of pocket we were able to pick which brand and features we wanted. The pediatric version of the monitor that we did the trial period with has a factory setting to alarm at 90. We wisely acknowledged that we would really not benefit from that as he is below 90 about 75% of the time. He is frequently in the 70s and often is not symptomatic until he is already in the 40s and it is too late for us to get his blood sugar up with dextrose. He just doesn't stay stable when he has been that low. Being we were already using this off label (because he's under the age of 7 and not diabetic) we chose the more expensive meter approved only for diabetic adults with a factory preset of 55. The company acknowledged that that would be a good choice too after they reviewed our 6 months of blood sugar readings.
So, about the pics above...Pics 1 and 2 are the meter that goes in Benji's feeding pump backpack outer pocket. It alarms when his blood sugar drops below 60 and when it is above 70 but dropping too quickly. It alarms frequently. I have not yet trained my "mommy radar" to always wake up when it alarms at night. In fact Glenn woke me last night after it had alarmed three times because he was not sure what to do. I sat up and bed yelled "WHAT!" I wake up for feeding pumps, apnea monitors, and oximeters but somehow this different beep is tricking my brain.
When we go back and review the 24 hour charts we are suprised at how much he alarms. We knew that we were sick of being in the hospital with him, we knew that he has some issues that we haven't fully figured out, and we knew that he was having some periods of low blood sugar that we were not detecting. We did not have any idea that it was so frequent and so related to stress/illness/bad dreams/his sensory stuff/corresponding autonomic issues. Those were all just theories we were talking to his doctors about.
Yesterday he had a slight temp. and one bright red cheek. He cried frequently and had a really off day. His blood sugar never got above 80 despite continual feeds. We weren't sure what was wrong with him. Viral illness? Uti not being fully covered by oral abx? Just a bunch of autonomic stuff? Glenn gave him some carrots and it went up to 250 and dropped into the 40s. We decided to stick with the tube feeds and not try to raise his blood sugar again. In the past we have encouraged him to eat and have seen it stay unstable all day long.
It also has an alarm for high readings. We initially didn't even program that, but as you can see from Pic 2 he seems to have some real high readings too which we think may be medication related. He has had a couple of times where his meter has shown his blood sugar to be normal or high when he is symptomatic of low blood sugars. Finger stick testing has verified this. We have had conversations with the company and it known that acetominophen skews the results. We now know to be more careful.
Pics 3 and 4 are the sensor and the transmitter that goes on his body. It is inserted with a,
gulp,
huge needle.
The huge needle leaves a tiny little wire sensor in his skin.
Still though, who like inserting anything in a wiggling three year old?
Port accesses were far less scary and painful even than these things. Anyways, it lasts for seven days. It reads the amount of sugar in the fluid in the fat just below his skin. As you all know Benji is lacking in fat so he has a few belly spots that are good and a bit of a miniscule back-fat on each side where we can place the sensors. It's pretty slim pickings on this boy who spent three years in the less than 3rd percentile on the growth chart.
For some reason I had hoped that this meter would automatically erase all of our problems with the admittedly time consuming process of stabilizing his blood sugars. It has greatly reduced the events but the concerns remain.
What is the actual reason for the hypoglycemia? Is it all just poor absorption and stress?
What do we do if it gets worse? Yes, it can actually get worse. He is not the only VACTERL child with hypoglycemia.
What are the long term effects of so many episodes of hypoglycemia on his body? Brain? Our sanity?
Benji is not coping well with the sensor insertions. Probably becasue his mom and dad are more than a bit stressed out by them. So far a couple of diabetic friends who have insulin pumps have told me that it gets easier. I am considering inviting them over for dinner at the exact same time that we need to change the sensor. :)
To help, we have named the sensor/transmitter that goes on his skin "Mr. Pokey." You would think that you were driving a nail into his limbs when we place the sensor. He calls the receiver "My GPS." The GPS in my car is a forbidden item so he thinks that we bought him one. We tell him several times a day that he is a good boy for not touching Mr. Pokey and remind him that only mommy and daddy touch the buttons on his GPS. We've had a couple of conversations about how Mr. Pokey only hurts for a minute and how GPS never, ever goes in the toilet because he's scared of water. He does seem to enjoy showing his "stuff" off to people. For the first couple of days he repeatedly yelled "mommy, I'm beeping." Now he just quietly comes to us when it alarms. So far his GPS has had a couple of close calls with the dog water dish and the sink.
So, the technology that we did not want months ago on his already crowded little body is within a couple of weeks something that I can not imagine how we would ever live without. Or how we got by without it. In the past I have been amazed by the technology of Zevex, the manufacturers of his tiny little feeding pump that can be carried by a toddler. 15 years ago I worked at an Intermediate Care Facility for Children. Feeding pumps then were the size of concrete blocks and felt about the same when they fell on your foot. I am astonished that Dexcom could put such great technology is a device the size of a iphone. It would bring tears to your eyes too if you lived with him.
I'm sure that when Benji starts school this fall, Mr. Pokey will be a welcome sight by the teachers. For now I emailed the company to see if they have a non-functional transmitter and/or meter that they could spare so that we can place it on his medical play doll. He has a doll with all of the same holes and stuff as him. Feeding tube, chait, scars, yep, they are all there. They have been amazing to us so far so hopefully they can accomodate our request.
