Sensor Update

After a week of wearing the blood glucose sensor, Grace was thrilled to have it out. When she first had it put in, it was annoying and irritating but by the end of the week, she didn't really complain about it and became pretty used to it. Honestly, I think the thing that bothered her the most was the adhesive on the bandage they used. She has sensitive skin and it was completely raw, red, and irritated when they took it off. This time we had 3 nurse educators, 1 Medtronic rep, and a partner in the practice take a look at the data.

After they removed the sensor, they asked us to wait in the waiting room. SpongeBob was on the TV so the kids were quiet but I kept looking at the clock and the time that was passing. It seemed like it was taking a long time to read the data. Her numbers were really all over the place so I knew that much but with the wait, came the anxiety.

When they finally called us back, they had printed out all of these fancy charts and graphs. I don't do fancy charts and graphs. I see graphics like that and my head swims. But the first words out of the nurse educator's head made me focus, "We have a problem." That will get anyone's attention. I started repeating to myself in my head, "Don't panic. Don't panic. Don't panic. Focus." But all of those serious faces looking at you isn't exactly relaxing.

In short, this is what the sensor revealed: Grace's overnight blood sugar looks like a roller coaster. Beginning at 9pm her numbers start to climb. They peak at 12am and then begin a steady decline until about 6am. The problem with the decline, and this is where my nausea set in, is that her blood sugar was dropping to 40 around 4:30am. At least that's what we think. The sensor doesn't measure below 40. It's entirely possible she has been even lower. I stared at the graph as everyone was talking. I saw the plunge and how it stopped at 40. I couldn't stop staring at it.  It does not wake her up and, as our doctor had accurately thought, she has been having so many lows, she doesn't really feel them as much as she should. He was smart to order the sensor. I owe him a hug on Monday when we see him for our check up.

I know I must have looked terrible because they all started talking at once. Overnight lows are a parent's worst nightmare. It's why we check our kids overnight. I was checking but not at 4am. I didn't catch it. They explained lows like that are bad if they are sustained over extended periods of time. A low of 40 for an hour will not harm Grace in the short run. They couldn't spit out the comforting words fast enough. But then the doctor chimed in, "But this is still very concerning."And he had my attention again.  He thinks Grace's pancreas is putting out a little bit of insulin overnight driving her numbers down. We had assumed her pancreas was no longer able to make insulin but he explained the pattern of a steady drop and then a rise around 6:30am means her pancreas still has some insulin to put out.

While my head was spinning it occurred to me I was looking at perhaps the four smartest people in the country working to help my daughter. They debated the cause of the problem and did not heistate to mix it up with one another. The nurses took the doctor to task who in turn took them to the mat. They were all fired up trying to come up with a solution. I was so overwhelmed by not only the complexity of the problem but also the dedication of the team, their passion, and their knowledge.

So here is the solution(s) they offered. 1)They gutted Grace's pump settings and we are starting over. This means around the clock checks for a while. Her overnight numbers were high last night but not low so that is good but still in need of tweaking. 2)They recommended thinking about wearing a sensor more regularly. They can be purchased through insurance. Grace does not like the idea. 3)Grace has been having stomach aches and headaches intermittently for 6 months. She is going to get blood drawn for a Celiac's screen to see if this is causing those symptoms. It can also affect your blood sugar.

When we left, we shared the elevator with a little boy in a wheelchair. His mom said to me, "What a long day here." Her son responded, "We've been here all day and it's so boring." Grace said, "I know. I was bored, too." I should have asked that mom for her number so we could go out for a drink. The look on her face, the look on my face, the looks on the faces of our children said it all. Everyone was spent. Sometimes I leave CHOP energized and ready to take on another round of diabetes. Yesterday was not one of those days.

Technology

We've added a new piece of medical technology to our arsenal. Yesterday, Grace was put on a continuous glucose monitor (CGM). A CGM is a piece of equipment many diabetic folks use to help them get a really solid idea of what their blood sugar looks like. Over the summer, Grace had two extremely low blood sugars that were almost 100% asymptomatic. A normal blood sugar is around 100. We give sugar to Grace any time her sugar starts to drift below 75. A low blood sugar can come from physical activity, too much insulin, or, it can be pretty random. Typically people feel lightheaded, have shaky legs, or become confused. Grace didn't really exhibit any symptoms when she had a 28 and a 32.   This is extremely unusual. I emailed Grace's doctor and I knew it was bad because he called me back right away. He was concerned that Grace might be experiencing more low sugars than we were catching and that she may have become desensitized to the low sensation. He encouraged us to immediately book an appointment through the office for an ipro CGM.

The CGM is inserted under the skin very similar to Grace's insets for her pump. A long tube stays in the skin and takes glucose readings every five seconds. That's pretty insane to me. It stays in for a week and then the doctor pulls the data and can tell us exactly where we need to make adjustments in Grace's insulin. Ironically, we are now experiencing problems with high blood sugars that climb over night. The data from the CGM can also help us address those.

Grace was very anxious about the CGM and neither of us really knew what to expect. Our favorite nurse educator was going to place the sensor. We love Erin-she helped us get started on the pump. But what we didn't expect was the large audience that came to watch. Grace was the first kid at CHOP to have the latest release of the sensor. In our room we had two nurse educators, 3 Medtronic reps (the company that manufactures the sensor), and, at the end, one of the senior doctors in the practice. I felt bad for Grace. She was giving everyone the "pursed" smile. The insertion went great and is very similar to having a pump site inserted. What we didn't anticipate is just how big the thing is. The sensor is under the skin but the chip that collects the data is seashell shaped and sits above the skin.

We waited for a while for the sensor to start working and then met with Dr. W who supervises our doctor. Our doc (I mentioned this before) is a "fellow" at CHOP and is overseen by the senior physicians. We've met Dr. W before but always very quickly for him to sign off on our visits. Yesterday, he came in, and walked right over to Grace, put both hands on her knees, looked her right in the eyes and said, "You're going to be ok sweetheart. I promise you-you'll be just fine." Grace looked right at him, again with pursed lips, and nodded. I inhaled and exhaled. Grace was worried the sensor site had a good amount of blood near it but the doctor assured us it was normal and actually a good sign of a well-placed sensor. He cracked all kinds of jokes which made us laugh. He explained to Grace why she would wear the sensor and confirmed that those bad low blood sugars were very concerning. He went on to say to Grace, "Dr. G tells me your mom worries a lot about you. We don't want moms and dads to worry too much so we have this cool technology to help them. Mom loves you so much, she wants to keep you safe. It's only a week you have to wear it and you're done. Then mom can sleep better." I was basically staring at the ceiling, biting my bottom lip, trying not to sob. CHOP gets it. It's not just about bodies, and blood sugars, and aren't these little people interesting with their medical problems? Our team had discussed me, my concerns, and came up with a plan to help all of us. I walked out of there relieved, tired, and wanting to curl up under the covers with Grace for a week til this is over.

Next Wednesday the sensor comes out and we can see what it tells us. It's a relief to put this issue in someone else's hands. The doctor was honest and explained the data could be all over the place and we might have to try again in 3 months. To me, it's worth the risk and inconvenience. Grace has been handling it all like a champ. She's annoyed by the size of it, it's itchy, and kind of bothers her when she sits. I hate seeing it on her. She has her site for her pump and now this. She's looking somewhat bionic which is really disturbing me. But she's happy. She went off to school today and barely a word was said about it. We're off to soccer in a minute and she hasn't said a word about it. So I leave her alone. My issues are not her issues. I think this is a good policy to stick to.

Things You Should Know

Once again Team Grace will be walking to raise money for the JDRF. Last year was our first walk and it was such a wonderful experience. The JDRF is a phenomenal organization. Their primary goal is to find a cure.

Many of you were extremely generous last year. All together we raised over $2,000! We're hoping to do the same this year. While many things have changed for us over the past year, there is a constancy to diabetes that is maddening. Here are some things I want you to know about our life with type one.

1) We check Grace's sugar at least 6x a day. It requires Grace to drop what's she's doing-extremely hard for an active kid-and get her finger pricked. Grace essentially can't eat until we've checked her sugar.

2) We frequently check Grace's sugar in the middle of the night. Not for giggles. Kids can go dangerously low in the night. I check her to keep her safe. It makes her tired. It makes me tired.

3) You might not know it when your child is fighting off a virus. We know immediately when Grace is fighting a virus. Even though she might not be sick, the act of fighting it off makes her diabetes go nuts and it makes her feel awful.

4) I receive multiple emails a day from our school nurse letting me know what Grace's numbers are, how her disposition is, and sometimes a phone call so we can discuss treatment. Essentially, every other hour, we are dealing with diabetes even when Grace is at school. She spends lots of time in the nurse's office when the other kids are at recess, lunch, or class.

5) Grace hates diabetes. It frustrates her. It makes her angry. Sometimes she doesn't want to cooperate and we have to make her. We argue about diabetes. I yell. She yells. She cries. I cry. The whole thing sucks and makes you feel like the meanest parent in the world when all you want to do is keep them safe.

6) Grace wears an insulin pump 24 hours a day, 7 days a week. It is not a cure for diabetes. A pump is a programmable pancreas. It's not "smart." It doesn't know when she is high or when she is low. We have to tell it what to do. Telling it what to do requires a close analysis of all of Grace's blood sugar numbers. Give too little and her sugar goes high. Give too much and her sugar goes low creating a dangerous situation.

7) Every three days we run a new "IV line" of insulin. It requires injecting a needle which leaves a tube under her skin to receive insulin. It hurts and Grace does not like changing her site. But it's better than needles all day long.

8) There is no cure for diabetes. In fact, there really is no cure on the horizon. Not even close. But we hope every day someone, somewhere will have a breakthrough. Despite this, Grace starts every day with a smile, spends her days like other kids, and doesn't let this thing stop her.

9) Diabetes puts a hurt on your heart like you never thought possible. The worry is a constant in your life. It never leaves, never gives you a break, never lets you rest.

10) Please consider a donation to the JDRF.

Here is the link to our page
http://www2.jdrf.org/site/TR?pg=team&fr_id=1796&team_id=61929