This is Diabetes

Last week we went in for our routine visit with our doctor. We see him every three months. It just so happened that we were at CHOP 3 weeks in a row. One for the visit and the previous two weeks we were there for the sensor placement and reading. When we walked down the hall it kind of felt like something out of Cheers. We ran into no less than 5 nurses/doctors who recognized us immediately. While I love that about our practice, it was also a little reminder that we have spent way too much time there lately.

The doctor went over the data from the sensor to make sure I understood everything. He was speaking slowly and quietly pointing to numbers. He was definitely using his "now it's time to listen carefully" voice. He concurred with everything everyone else had said. He reiterated the sensor caught some very dangerous low sugars in the wee hours of the morning and what changes we were making to fix those. He asked if I was ok. I'm sure my face was grey. I asked him if he thought I was overreacting. He said no but then quickly followed with, "this is diabetes." He continued to talk but I don't think I really heard him. His words kept rattling around in my head. He emphasized these things happen and there was nothing unusual about it. We just haven't experienced it yet. In short, we're still learning.

We shifted gears and came up with a plan to overhaul Grace's pump settings. Since the settings were changed, Grace's blood sugar has basically sucked. She keeps spiking high overnight so that means waking every night at 2am to check to make sure I didn't give too much insulin to fix the high. We're monitoring her sugar closely and I'm petty sure I've exchanged emails or have spoken to Grace's doctor almost every day for the past 2 weeks.

Speaking of monitoring, the doctor wants Grace on a continuous glucose monitor for at least one week a month. It's similar to the sensor she wore but it's much, much smaller and Grace has to carry a receiver with her. Dr. G had brought one in for us to see and hold. Grace didn't like it because it was big but she agreed to give it a try "because she hates the feeling when she's low." A CGM alarms when sugar is low and when it's high. It takes a reading every 5 minutes and can let you know if you're trending low or tending high. So if Grace's sugar is 88, is it actually heading low? Then we can cut that low off at the pass. I can look at the receiver in the morning and see if we're having problems with overnight lows. I started the paperwork last week. My biggest priority is to keep Grace safe and this device holds a lot of hope for doing just that.

I didn't even know it was close, but the latest version of the "Dexcom" was just released yesterday. It's a huge improvement over the older model. It's small, colorful (if you pick pink or blue) and has all kinds of fancy alarms. Grace and I watched the video and we're both super excited with the improvement. The bummer is it's one more thing for Grace to keep track of. She has to take it with her wherever she goes but the nice thing is it helps to eliminate the big uncertainty of monitoring your child's blood sugar. I've heard CGMs can be frustrating until you get the hang of them but I spoke to our nurse educator today and she was extremely positive that a lot of kinks had been worked out in this latest version Here is the link to the site if you want to check it out: www.dexcom.com So for now, we're actively problem solving, consuming ridiculous amounts of coffee, and thankful the new dexcom cleared the FDA just in time for us to give it a whirl.

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

Time Machine

I know I haven't updated the blog in a while. I started a new job and life is flat out crazy right now.  Grace is doing beautifully and her one year checkup was all A's.

I heard from a friend tonight that a member of his family was just diagnosed with T1. I always sigh when I hear news like this. Another member of the club. Another family put through the ringer. I thought about what I'd like to share with them. I know I wanted to hide from the world when we came home from the hospital. I wanted to sit on the sofa, hold Grace and watch iCarly reruns for years. But you can't do that.  The world doesn't let you do that. Your child won't let you do that. If I could go back in time, this is what I would tell myself.

Your life isn't over. It's simply changed. Diabetes is a major time suck. Checking blood sugar, giving shots, figuring out carbohydrates. It's annoying but don't let it immobilize you. Go out for ice cream, enjoy a slice of pizza. A high blood sugar is not the end of the world.

You are smarter than you think. All those classes you had to take when you panicked you weren't getting it. You did. It takes time to sink in. It will. And you will continue to educate yourself. You will get this. Be patient.

Your child will have bad days just like you. They will be angry, frustrated, confused. Accept their anger, confusion, and frustration. Assume it all on your strong shoulders and help them. Sometimes it's just a silent hug. Sometimes it's a long talk. Sometimes it's tears like you never thought possible. Know when to hug, when to talk, and when to reach out for help.

You will make mistakes. You will give too much insulin. You will not give enough insulin. Do not start down the road of the blame game. It's extremely hard to get off of that road. You will live and you will learn. And know what? Sometimes diabetes makes absolutely no sense. It's not you. It's diabetes.

You will feel terribly alone but you are not alone. There is an army of children and parents standing behind you. They will pick you up when you fall. They will carry you on their shoulders because they have been there and know your pain. You are not alone.

Do not give diabetes more time and emotional energy than it already takes from you. You can control it or it can control you. You make the choice.

Be kind to yourself. Nothing you did or didn't do caused this situation.

Advocacy. I'm so proud of Grace when I see her not hiding her insulin pump. There is nothing to be ashamed of. Teach your child to be a teacher. This comes with patience and acceptance. Grace is surrounded by wonderful friends who understand what diabetes is support Grace through it all.


Allow yourself time to grieve. Many perfectly well-intentioned people will say to you, "You will just get used to a new normal." You may feel rushed to get back out there. Maybe even pretend nothing has happened. You and your child have experienced a loss. Don't ignore that pain. Honor the pain when the days are bad and know it will pass.

Do you know why that pain will pass? It will pass because your child is beautiful. Strong beyond your wildest dreams. They will show you how to stand up when you think you can't. They will show you how to smile and laugh when you think you can't. They will show you the beauty of life when you feel the most intense pain. Your baby will show you the way.

You will be fine. It may not seem like it now. I promise you will.

Healing

A few months after Grace was diagnosed we started meeting with a therapist to help her deal with all the struggles, anxieties, and fears she was experiencing.  The sessions went well and we started to see some progress.  Our therapist warned us it could take time for all of Grace's emotions to come to the surface-like a lot of time. When she was ready to talk, Stephanie counseled us, we had to be ready to listen.

It's been almost one year since the diagnosis.  At dinner 2 weeks ago, unprompted, Grace began talking about her time in the hospital and it all just kept spilling out.  I put my fork down and started to panic. This was it. Here it all comes. What do I do? Is there an answer in a book? Who can I call? Of course you don't have time to do anything but listen so I did. Grace said she was scared in the hospital-really scared. Luke chimed in he was scared too. He didn't know what was wrong. I was watching the two of them hash out this conversation and felt overwhelmed but relieved it was coming out. Grace continued: "I felt so scared and alone. And I missed my friends. And I didn't know if anyone would like me anymore. I was just so sad." I'll give you a second to grab some tissues.

What came next practically knocked me out of my seat. I was prepared to rush to her side, hug her, squeeze her, whisper "I know." But that didn't happen. Instead, it went like this, "Hey mom-wouldn't it be awesome if I could give kids a bear when they first go into the hospital so they wouldn't be scared and they would already have a friend just like them!" Luke, "I want a bear!" She didn't stop there. She barely came up for air. "Hey mom-we can have a lemonade stand and sell cookies and drinks to raise money! Or we could buy an ice cream truck and you could drive it while I sold ice cream!" Luke, "Can I have an ice cream?"

And there it was: Grace's plan for healing is to help other kids on their path to healing. Just to be clear-Grace is not some ethereal presence sent to live amongst us. She's a normal kid. She annoys her brother, rolls her eyes at me, trashes her room, and is a flat out disgusting eater. If she asks to use your bathroom, say no, lock the doors, and tell her to go home.  That being said, her sense of selflessness continues to knock me over.

I sat on the idea for a few days and Grace kept bugging me about it. I contacted our social worker to see if this was even possible.  JDRF has a "Bag of Hope" program and, if you sign up for it, you can receive a "Rufus Bear" who is lots of fun because he has patches where he can receive insulin. We love Rufus but Grace was adamant kids needed a Brave Bear in their hands the second they are admitted. She wants it to be something they can squeeze, something they can hold with no insulin patch sites. We heard back within a few days that the idea had been approved and everyone at CHOP is over the moon about the project.  The "Brave Bears" program is off to a good start.  Our social worker is working on getting us the numbers of kids admitted each year. Once we have that number, we can come up with a fundraising strategy and move forward.  Grace wants each kid to receive a bear with a note from her. She's been working on some drafts which include messages like, "Diabetes doesn't change who you are. You are brave. You are not alone." I hope you still have those tissues handy. Every time I see her working away on this project it makes me so, so proud (even if she is a totally gross eater).

So many of you have already responded with awesome ideas to raise funds: silicone bracelets, Biking for Bears, Beer for Bears, Beef and Bears-it's fun to kick around these ideas.  So stay tuned. We'll be calling on everyone's help to get this project off the ground!

Respect

If you're like so many people I know, you're battling a weird spring virus or someone you know is dealing with an awful cold or cough. We got hit hard last week when Luke got nailed with the double whammy of strep throat and croup. I've honestly never seen him so sick. He curled up on the sofa with glassy eyes and a sweaty head begging for me to watch ESPN with him. So I did. It's what parents do. At its worst, he was up all night with a fever that wouldn't relent. We gave the advil/tylenol combo but it wasn't helping. Poor Tom looked at me at one point and asked if that was all we could do. It was but that was little comfort to Luke or us.

So it was only a matter of time before Grace got hit with something. Between a nasty virus and a highly contagious bacterial infection, odds were, we were in for something.  On Tuesday she woke up complaining her head, stomach, and throat hurt. Her head was scorching hot. I had an "oh shit moment." I tested her blood sugar-high. I tested for ketones-raging purple. We've dealt with little bugs in the past that gave us some ketones and high sugars but nothing like this. Rather than pull all my "what to do materials" from CHOP, I just decided to page the doctor. We got lucky. Our doctor was on call.

He walked me through everything we had to do. I tried to not sound panicked but I'm reasonably sure the doctor realized I was. I could tell he was deliberately speaking slowly-asking me to repeat information back to him. He asked if Grace could eat something. I asked her and she weakly replied, "no." The doctor had heard and he said "oh, that doesn't sound like the Grace I know." He gave me a plan of action that basically involved lots more insulin through the pump and lots of fluids. Grace couldn't move from the sofa. I'd page him in a few hours to give him an update. If the ketones weren't clearing out, we'd have to talk about a visit downtown.

We spent basically two days like this. We repeatedly saw blood sugar numbers in the 400s and yesterday we even hit 502. The 502 sent me over the edge. She didn't have ketones but a 502 (when normal is around 100) was just not good. Our doctor encouraged us to page him any time we had questions. He got back to us immediately and we made a few more changes to the pump but essentially he said this is what to expect when a diabetic child gets sick.  While it's certainly not "normal," it is normal in the world of diabetes. I was so frustrated at this point. Not only was Grace sick with an awful virus, but she was also hit by the truck of diabetes. It was infuriating. I just began spewing everything I was feeling and Dr. G just quietly listened. I asked if he thought I was being over reactive, overprotective, and basically a spaz. His immediate reply was a very firm, "no." He said he is the first to say "don't let diabetes run your life. Don't let it take over. Don't let it slow you down." But he said in this situation he would be the first to say, "Respect the power of diabetes-it's time to slow down and handle this carefully. This is serious stuff." We probably spent another 10 minutes talking-him reassuring me all would be ok. If I had the slightest question or doubt-page him. His last words were, "You are doing awesome. Hang in there."

We do spend most of our time pushing past diabetes. Grace most certainly doesn't let it slow her down. I try not to give it too much space and, honestly, most days it's just an annoyance and great sucker of time. But seeing what this thing can do-how quickly things can get really dicey- definitely made an impression on me. Grace weathered it well. While annoyed and frustrated, she seemed to like the mom time she got and the gummy worms for doing a good job at the doctors. This morning when she left for school she looked beautiful-happy and smiling and full of silliness (while Luke whined and carried on about something-you can't win them all). I'm hoping this thing is done and we can just move on. It was awesome seeing Grace run out the door for school. After she left I thought it was funny how excited and full of energy she was when all I could do was stare at the coffee pot wishing it would magically produce more. It's going to be that kind of day-maybe for a few days.