This past week has been completely frustrating and it culminated with a trip to Philly's Children's Hospital ER yesterday. I appreciate all the comments on twitter and facebook. Some of you are still wondering what the heck happened. Well, here's the skinny.
Last week Grace started with a bad head cold. Her blood sugar became increasingly erratic. This isn't new to us. What was new were the persistent ketones that showed up to play. Ketones are a nasty acid that type one folks deal with when they don't have enough insulin in their system. When you are sick, you need more insulin but it's not like there's some formula you can use to determine exactly how much insulin. It's largely a guessing game with some solid guidance offered by CHOP.
I'm used to dealing with ketones and Grace. She seems to get them more often than other type one kids and it's just one of those things. I have the drill down pat. You don't mess with ketones. Untreated ketones can lead to bad bad things that I don't like to say out loud. When we test Grace's pee and we see ketones are present, essentially the world has to stop for a few hours. There's no running around (that exasperates the situation). Grace usually feels crummy anyways. We up her insulin and she has to drink fluids. Ketones make your stomach hurt, head hurt--like you've been hit by a truck on top of the virus you already have. Her drink of choice: diet Dr. Pepper. I've learned to buy this at Costco because you go through a lot with ketones. I never routinely offered either of my children soda before all of this. . .
Grace's cold ran into sinusitis. We got an antibiotic and had a good few days. And then the cough began. Back to the pediatrician who said bronchitis and a new antibiotic. He was concerned and wanted me to check in with him. Ketones were persistent and Grace felt awful. When I checked in the next day, Grace had been sent home from school, ketones gone crazy, and high sugar (450). He sent us off to CHOP.
Grace freaked when I told her we had to go in so we packed a bag with her favorite things: ipad, blanket, 2 stuffed friends. I was hoping it would be fast and it was, relatively speaking. Grace was a little dehydrated so they wanted her on some fluids but the nurse missed her vein in her hand. I'm reasonably sure I agreed to buy a laptop, ipad mini, and pony to get her through the experience of fishing for a vein that would work. Lab work came back fine and chest x-ray showed a nasty virus. There was nothing they could really do for us. Grace kept begging to see her endo doctor but he has patients on Thursdays. We asked our attending to try and leave a message and he was very kind and "swore" Dr. G would know we were there.
We were discharged a few hours later and our endo actually called us as we hit the road for home. I had him on the car phone and Grace was so excited to hear him. I watched her head nodding in the back seat as he spoke to her. He went over everything with us. He got back from his patients and her x-ray and labs were on his desk (how about that people-does CHOP rock or what?) He took a lot of time explaining everything, he listened when I ranted and raved about the damn ketone situation, and he was sincere in acknowledging how frustrating this all is. There was no pep talk as he has done in the past. He gave more of a "just hang on" kind of talk and said this is about as hard as it gets short of a hospitalization. We are still battling the ketones off and on today and Grace's cough is still awful. We're under strict instructions if Grace spikes a fever to come right back to CHOP. Odds are, she won't be able to stay hydrated, so crucial in managing ketones.
Grace went off to school today worried she had missed work and felt unprepared for her tests. Her teacher is very accommodating and I assured her no matter what happened, it would be ok. I don't want her to worry about any of this. I made myself smile all day yesterday in the ER. "It's no big deal" I kept telling her when, on the inside, I knew it was a big deal. The resident physician was very nonchalant and wanted to send us home. The attending felt quite different and explained all the tests he wanted. Grace kept looking at me. "It's no big deal," I told her. The doctor picked up on the vibe and kept echoing my sentiments with lots of eye contact with me. Holding it together is the hardest part. I had a few moments talking to her endo in the car when I had to take a few, giant deep breaths to keep it together. It's important to me that Grace sees that diabetes is managed with insulin, sugar, and strength. My "brave face" isn't just about getting me through. So many of you ask me, "how do you do it?" "How do you do this every day?" It's crucial Grace learns how to handle every obstacle diabetes will throw her way. Strength is a huge part of that formula.
Friday, November 9, 2012
Tuesday, October 9, 2012
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.
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.
Thursday, September 27, 2012
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.
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.
Thursday, September 20, 2012
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.
Wednesday, September 12, 2012
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?
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?
Wednesday, August 8, 2012
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.
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.
Monday, June 11, 2012
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!
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!
Thursday, May 17, 2012
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.
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.
Friday, May 4, 2012
Just Keep Swimming
I had this profesor in college who was famous for raking students over the coals. He sensed weakness and pounced on it. If you had not seriously prepared for class, he would tear you apart. It was like sport to him. I loved it.
One day I was caught unprepared and the glee this man took in seeing me stammer was disturbing. He announced to the class, "Lawrence is frantically treading water in the deep Atlantic waters-don't any of you throw her a life jacket." I can laugh about it now. After years of therapy.
This "treading water feeling" is how I've felt lately with Grace. Life on the pump continues to be awesome for her. I know she has no regrets or questions about whether it was the right choice. But this past week was completely awful. Her numbers were all over the place and as much as I studied them, they were just not making sense. She's high, she's low, dear God she's really low. That was our week.
We had our check up with our favorite doctor yesterday and he got me back on course. He had pushed from day one to get Grace on a pump and he is so, so excited we made the move. He asked LOTS of questions about what we like and don't like. He's a really good listener. He totally sympathized with where we are in the process. I think Tom and I were obviously flustered while we delineated all our issues with pumping. While we talk, it's very hard to not get preoccupied with Grace to make sure she is ok. Grace is always curiously quiet in these appointments. Yesterday she was content to create an intricate doodle while we talked. I encourage her to talk but for now I think it's important for her to find a way to deal with these long appointments filled with crazy medical talk.
A cool feature of the pump is the ability to upload all Grace's data to a web site that the doctor can then access. We looked at the data and it was comforting to hear him say, "Oh wow, she is kind of all over the place." He walked us through how to read the data (less of a problem for Tom, more of a problem for me). Then he came up with a plan. We'll tackle one set of numbers at a time making very small changes as we go. But he also encouraged us to take control of the pump. He wants us to build confidence with our decisions and feel comfortable making adjustments--as long as we do it slowly and methodically. Once a week he wants us to upload Grace's data and he'll take a look. He wants us to include what's going on with Grace. Has she been unusually active, unusually quiet, fighting off a bug, etc. We'll include our thoughts on what changes should be made and he'll review them. That giant breeze that overtook the Delaware Valley at 2pm yesterday? That was me-exhaling.
We also learned our doctor will be staying on for 2 more years. This was even more relief. Most patients see nurse practitioners. In fact, I know of no other T1 kids at CHOP who see a doctor. CHOP has a fellowship program that trains doctors to be pediatric endocrinologists. I knew in the back of my head that at some point the program must end and we'd lose our doctor. I feel extremely comfortable communicating my frustrations with him and I feel like, over the past almost year now, he has a good feel for how to communicate with me. I've said this before, but one of the major frustrations of diabetes is its unpredictability. To know we have some stability with our doctor is also a relief. I left CHOP relieved-relieved for stability and for the guidance CHOP continues to offer us. I always leave there feeling like we're not alone, like we can do this another three months. It sounds weird but I actually love the time I have with Grace after our appointment is finished. She babbles away in the backseat about music, school, life. It's extremely cool the way she wants to talk to me about whatever is on her mind. If diabetes is on her mind (which I don't think it is), she doesn't mention it. It's just a return to normalcy-back to our regularly scheduled program.
One day I was caught unprepared and the glee this man took in seeing me stammer was disturbing. He announced to the class, "Lawrence is frantically treading water in the deep Atlantic waters-don't any of you throw her a life jacket." I can laugh about it now. After years of therapy.
This "treading water feeling" is how I've felt lately with Grace. Life on the pump continues to be awesome for her. I know she has no regrets or questions about whether it was the right choice. But this past week was completely awful. Her numbers were all over the place and as much as I studied them, they were just not making sense. She's high, she's low, dear God she's really low. That was our week.
We had our check up with our favorite doctor yesterday and he got me back on course. He had pushed from day one to get Grace on a pump and he is so, so excited we made the move. He asked LOTS of questions about what we like and don't like. He's a really good listener. He totally sympathized with where we are in the process. I think Tom and I were obviously flustered while we delineated all our issues with pumping. While we talk, it's very hard to not get preoccupied with Grace to make sure she is ok. Grace is always curiously quiet in these appointments. Yesterday she was content to create an intricate doodle while we talked. I encourage her to talk but for now I think it's important for her to find a way to deal with these long appointments filled with crazy medical talk.
A cool feature of the pump is the ability to upload all Grace's data to a web site that the doctor can then access. We looked at the data and it was comforting to hear him say, "Oh wow, she is kind of all over the place." He walked us through how to read the data (less of a problem for Tom, more of a problem for me). Then he came up with a plan. We'll tackle one set of numbers at a time making very small changes as we go. But he also encouraged us to take control of the pump. He wants us to build confidence with our decisions and feel comfortable making adjustments--as long as we do it slowly and methodically. Once a week he wants us to upload Grace's data and he'll take a look. He wants us to include what's going on with Grace. Has she been unusually active, unusually quiet, fighting off a bug, etc. We'll include our thoughts on what changes should be made and he'll review them. That giant breeze that overtook the Delaware Valley at 2pm yesterday? That was me-exhaling.
We also learned our doctor will be staying on for 2 more years. This was even more relief. Most patients see nurse practitioners. In fact, I know of no other T1 kids at CHOP who see a doctor. CHOP has a fellowship program that trains doctors to be pediatric endocrinologists. I knew in the back of my head that at some point the program must end and we'd lose our doctor. I feel extremely comfortable communicating my frustrations with him and I feel like, over the past almost year now, he has a good feel for how to communicate with me. I've said this before, but one of the major frustrations of diabetes is its unpredictability. To know we have some stability with our doctor is also a relief. I left CHOP relieved-relieved for stability and for the guidance CHOP continues to offer us. I always leave there feeling like we're not alone, like we can do this another three months. It sounds weird but I actually love the time I have with Grace after our appointment is finished. She babbles away in the backseat about music, school, life. It's extremely cool the way she wants to talk to me about whatever is on her mind. If diabetes is on her mind (which I don't think it is), she doesn't mention it. It's just a return to normalcy-back to our regularly scheduled program.
Friday, April 27, 2012
Getting to know you. . . .
. . . .getting to know all about you. This is the way I feel about Grace's pump. So many of you have been so nice to check in and see how things are going. I know a lot of you are curious to hear about our experience so far. Sorry it's taken me so long to post an update. The truth is, life with the pump is crazy, unpredictable, awesome, and frustrating.
Here is the awesome: Grace loves her pump--completely, totally adores it. All of our fears of her freaking out and not wanting to wear it have not come to fruition. From day one, she clipped it on her pants and went on her way. We change her site every 2-3 days and that could be going smoother. She squirms and gets really anxious. Once it's over though, it's done.
Here is the frustrating: it's not like you just get hooked up to the pump, CHOP plugs in some numbers, and there you go. Enjoy! Our doctor sent me an email before we started pumping full of "you'll be frustrated" and "lots of sleepless nights" and "sometimes wishing you could go back to shots." I gave that a big ole whatever. We'll be fine! We're diabetes superheroes! We're so smart we'll figure this thing out in a day! And, to a certain extent, I believed that to be true the first week.
And then Grace's sugar began dropping and dropping and dropping. And then her night time sugar began climbing, and climbing, and climbing. And then I realized what the doctor said was true. This thing requires a lot of work to get right. The wonderful thing about the pump is you can adjust Grace's insulin all day long. Having an active morning, let's cut back on the insulin a bit. Having a waffles for breakfast, let's crank the insulin for a bit. Going high over night, let's see if we can get that back in range. But in order to get things just right, you fail. You almost kind of have to fail to realize where the pump settings need to be. That means Grace will go low and Grace will go high as I attempt to find just the right dose to keep her where we want to be. That means checking her sugar around the clock, getting constant updates from the school nurse, looking at numbers, and trying to identify trends. You make changes but you make them ever so slowly. I try not to get mad at myself when the numbers don't work out. I inhale, exhale, repeat. I'm tired. I haven't slept through the night in I don't know how long. It makes me irritable and, honestly, a real joy to be around. Ask Tom.
Sometimes things go wrong and they go wrong in a bad, bad way. Grace was in the 300s all night Wednesday. I figured we just needed to crank the insulin a bit more. But when she woke up she was still in the high 300s and it was climbing. I had a major "oh shit" moment and realized her pump wasn't working. I pulled her site and saw the tube that delivers her insulin (canula) was bent at a 90 degree angle. Essentially no insulin got into her all night long. I knew to test for ketones (the nasty acid that builds up in your body if you have no insulin). In the past, we've had experience with mild ketones. But as soon as I dipped the stick in Grace's pee it turned hot pink. Another oh shit moment. It's extremely easy for kids (and adults) on the pump to get ketones. It's also extremely dangerous. Too much ketones leads to bad bad things that I won't think about it. CHOP trains you for this in their classes so I knew what to do. Unfortunately, it's a lot of sitting and waiting to see if things are working. Grace was tired, her stomach hurt (if she started to vomit we'd be on our way to CHOP), and headachy. We sat and watched a movie and I hoped for the best. By noon, she was fine and back to school. Again, I inhaled, exhaled, repeated.
To bring Grace's sugar back in range, I had to stop the pump and give her a syringe shot. Her reaction to the shot confirmed for me why the pump is right for us. She sobbed, was angry, and adement she would not go back to shots. I feel the same way. I like what the pump has to offer us despite all the work we're putting into it. It's a challenge-like a giant puzzle with multiple moving pieces and those pieces change every day. I've never been a fan of puzzles but I'm working on this one, talking to CHOP, other T1 parents, and reading as much as I can. I'm confident we'll get this. In the meantime, patience has to be the name of the game.
Here is the awesome: Grace loves her pump--completely, totally adores it. All of our fears of her freaking out and not wanting to wear it have not come to fruition. From day one, she clipped it on her pants and went on her way. We change her site every 2-3 days and that could be going smoother. She squirms and gets really anxious. Once it's over though, it's done.
Here is the frustrating: it's not like you just get hooked up to the pump, CHOP plugs in some numbers, and there you go. Enjoy! Our doctor sent me an email before we started pumping full of "you'll be frustrated" and "lots of sleepless nights" and "sometimes wishing you could go back to shots." I gave that a big ole whatever. We'll be fine! We're diabetes superheroes! We're so smart we'll figure this thing out in a day! And, to a certain extent, I believed that to be true the first week.
And then Grace's sugar began dropping and dropping and dropping. And then her night time sugar began climbing, and climbing, and climbing. And then I realized what the doctor said was true. This thing requires a lot of work to get right. The wonderful thing about the pump is you can adjust Grace's insulin all day long. Having an active morning, let's cut back on the insulin a bit. Having a waffles for breakfast, let's crank the insulin for a bit. Going high over night, let's see if we can get that back in range. But in order to get things just right, you fail. You almost kind of have to fail to realize where the pump settings need to be. That means Grace will go low and Grace will go high as I attempt to find just the right dose to keep her where we want to be. That means checking her sugar around the clock, getting constant updates from the school nurse, looking at numbers, and trying to identify trends. You make changes but you make them ever so slowly. I try not to get mad at myself when the numbers don't work out. I inhale, exhale, repeat. I'm tired. I haven't slept through the night in I don't know how long. It makes me irritable and, honestly, a real joy to be around. Ask Tom.
Sometimes things go wrong and they go wrong in a bad, bad way. Grace was in the 300s all night Wednesday. I figured we just needed to crank the insulin a bit more. But when she woke up she was still in the high 300s and it was climbing. I had a major "oh shit" moment and realized her pump wasn't working. I pulled her site and saw the tube that delivers her insulin (canula) was bent at a 90 degree angle. Essentially no insulin got into her all night long. I knew to test for ketones (the nasty acid that builds up in your body if you have no insulin). In the past, we've had experience with mild ketones. But as soon as I dipped the stick in Grace's pee it turned hot pink. Another oh shit moment. It's extremely easy for kids (and adults) on the pump to get ketones. It's also extremely dangerous. Too much ketones leads to bad bad things that I won't think about it. CHOP trains you for this in their classes so I knew what to do. Unfortunately, it's a lot of sitting and waiting to see if things are working. Grace was tired, her stomach hurt (if she started to vomit we'd be on our way to CHOP), and headachy. We sat and watched a movie and I hoped for the best. By noon, she was fine and back to school. Again, I inhaled, exhaled, repeated.
To bring Grace's sugar back in range, I had to stop the pump and give her a syringe shot. Her reaction to the shot confirmed for me why the pump is right for us. She sobbed, was angry, and adement she would not go back to shots. I feel the same way. I like what the pump has to offer us despite all the work we're putting into it. It's a challenge-like a giant puzzle with multiple moving pieces and those pieces change every day. I've never been a fan of puzzles but I'm working on this one, talking to CHOP, other T1 parents, and reading as much as I can. I'm confident we'll get this. In the meantime, patience has to be the name of the game.
Friday, April 13, 2012
Best Day Ever
Wednesday was pump day for Grace. We practiced for a week with saline which felt like a lifetime to her. We still had to give shots but we also had to use the pump to get the hang of it. Every day Grace whimpered, "I can't wait for Wednesday. No more shots." She was so excited for Wednesday, she woke at 6:30am and went charging down the stairs like it was Christmas.
We headed down to CHOP bright and early. We waited for a bit and Grace had fun playing with a little guy who was maybe 18 months old. He dropped his dad's jacket on the ground, Grace laughed at him, repeat. And then his mom had to check his sugar and Grace said, "I didn't know babies could get type one." It was sobering but I encouraged her to get right back to the game. Don't let diabetes stop the fun. I put on the smile while inside my heart broke. Such a little guy.
We met with our pump teacher and ran through a site change. Grace had done really well with these in practice. Basically a long needle punches a soft tube under the skin which is held there with adhesive. The needle is in and out quickly but it freaks Grace out (me too). When I went to do the site, Grace howled. I missed going in and the needle scraped across the top of her skin. Grace was not happy with me. Not happy at all. Our nurse convinced her it was no big deal, happens a lot, and maybe I deserved a second chance. I nailed the next one but not without a giant eye roll from my darling. I have no idea where she learned to roll her eyes like that.
After that, we were on our way. The smile on Grace's face--I can't even express how beautiful it was. She was just so proud and relieved. I think we were both relieved. I was completely spent after our appointment. I hadn't slept well the night before. I've been anxious about our transition and, generally speaking, a stress case. We were meeting Tom in Old City for lunch but had some time to kill so we hopped a cab over to Rittenhouse Square and Barnes and Noble. I desperately needed coffee.
We got all settled with coffee and snacks when I heard a familiar voice, "Well, hello there." It was my dissertation advisor, mentor, and dear friend who was also having coffee. I could have cried. Allen looks a lot like the old guy from the movie Up--only not quite as cranky. We spoke for a while about history, life, kids. Grace said she wanted to buy a journal because she likes to write. Allen said he wasn't surprised. Our conversation calmed me--he always had a knack for that- a knack for refocusing me. He smiled so warmly at Grace and assured me Children's Hospital never, ever lets you fall. Grace got fidgety so we were on our way. Our conversation allowed me to exhale-like seriously exhale.
We whizzed around the city again but got to Old City early. Grace thought all this cab stuff was completely awesome. We had some time to kill so we headed down Second Street. We were walking along and Grace says, "Mom-what's this funny little street?" I had totally set her up. I knew if we walked past Elfreth's Alley she would be curious. We ducked down the street and Grace wanted a quick tour. Our guide asked us how much we knew about Philly history. I responded, "not much." Grace whispered, "MOM" and gave me the squinty eye look. I made she "shhh" motion and it was our little secret. Grace giggled. She loved the tour and then we had lunch with Tom. It was our first meal on the pump and it was just so, so easy. No tears, no worry that someone would stare while we gave a shot, no concern that the dose wasn't right.
When we were finally on our way home Grace asked if she could listen to Selena Gomez. She was totally rocking out when she said, Mom-turn it down! You know what? This was the best day ever! No more shots, a new book, seeing your friend-he looked old-how old is he?-the little houses, lunch with dad. I can't believe how good this day is!" It really was a great day. To see Grace so, so happy after enduring so, so much crap from diabetes made me smile, too. The pump doesn't fix everything diabetes throws your way. But it sure does make things a little easier.
Friday, March 23, 2012
Friends
Grace has the nicest group of friends. Like all 7 year olds, issues sometimes come up but I've been amazed how sweet and kind they are as a group. When Grace started the school year, she spent lots of time teaching them about diabetes. I love Grace's teacher for giving her the opportunity to talk to her friends. She has encouraged them to learn as a group and has allowed Grace the room to grow into her diagnosis.
Today, Grace spoke to her class about her new pump. They gathered in a circle and Grace explained how the pump worked. She was so proud to share with everyone and the whole class was so happy for her. You could see their excitement. The teacher encouraged a little Q&A. Here is a list of some of the questions they asked.
How does it work?
Does it suck your blood because I wouldn't like that.
Do you wear it all the time?
What if you're swimming?
What if you're swimming and it falls off?
If it falls off in the pool I'm a very good swimmer and I would get it for you because you are my friend (how sweet is that?)
Does it hurt?
Is diabetes a disease?
Is it better than all of those shots you have to take?
I hate needles.
What if you drop it?
I lost my ipod and mom was mad. What happens if you lose your pump?
What if someone knocks into you in a soccer game?
Can you watch movies on the pump?
What colors can you get?
Why do you have diabetes?
My uncle died from diabetes.
Can you do cartwheels with a pump on?
When will you get better?
Will you always wear a pump?
Grace did her best to answer each question. She didn't flinch at the "death" statement. She leaned over to me and whispered, "probably type 2 or maybe he didn't check his sugar enough." I nodded and concurred. When the friend asked if it was a disease, she responded, "No, my mom just says my pancreas is lazy." When she couldn't answer a question, I jumped in for a minute but it was her show. The last question was from my nephew Tim who is in Grace's class. Timothy was quiet the whole time but he kept sneaking smiles at me. I knew he was up to something. Tim's question: Can Grace go bungee jumping with that on? Me: Yes. Tim smiles, taps his fingers together and quietly whispers, "excellent." Grace looked nervously at me and I shook her off but gave the classic "Meet the Fockers" two eyes looking at you motion and everyone laughed. It felt so good to smile and laugh and to see how Grace has grown into a teacher in all of this. All of the kids want me to come back and sit down with Grace again once we get hooked up over spring break. It's totally awesome to be in a class that encourages this type of interaction. Normalcy is what Grace needs and she's thriving in that environment. But my normalcy, I do not mean bungee jumping, Timothy.
Thursday, March 22, 2012
How I get Sh** Done
I'm a nice person-like a seriously nice person. Need help with your kids? I'm there. Have a baby and want a casserole? Here's two. Family member sick? Have some soup. You say there is a family in need? Let me raid my attic.
I'm also a smart person. When asked in interview situations, "what is your strongest characteristic?" I routinely answer, "I get stuff done." And I do. From the time of Grace's diagnosis, Tom has always joked, "diabetes doesn't know who it messed with."
I'm a fighter. I've fought for Grace since she was two and diagnosed with a severe peanut allergy. I learned how to assert myself to make sure she was safe. I removed her from situations that were unsafe. I educated people along the way. I built a strong foundation of advocacy that has served me well these past few months. I never really cared if other people looked at me like I was "that mom." I don't have time for people like that.
As I type, I wait for the doorbell to ring. UPS is delivering an insulin pump for Grace. I wish it was as easy as picking up the phone and saying, "Hello Animas? Yes, I'd like the Ping pump! What color? Pink of course!" But it hasn't been that easy. It seems like nothing ever is in diabetes world.
Grace's friend has an Animas pump. It's pink. It's like totally awesome. She loves to show it to Grace. It was the pump Grace had to have, as only a 7 year old can want something. I don't routinely buy ponies, special gifts, candies or anything else that might spoil my children. But that insulin pump? Yes, I will make that happen. And I did. And this is how I made it happen.
Animas has not released any pumps since the beginning of March. There was a software problem with leap year. We got caught in this mess right before the storm hit. They were ready to ship our pump when they stopped shipping any pumps. Animas was curiously quiet as to what was going on. Very little information was being released by the company. I'd call and get vague responses, "Next week!" "Definitely next week!" "Maybe next week!" "We just don't know."
These interactions left me frustrated. Under the encouragement of Animas we had already scheduled an appointment at CHOP to get Grace "hooked up." It's hard to schedule these appointments. They fill fast. We all have lives. Finding large blocks of time to fit everyone's schedules is extremely hard. I was not going to cancel our appointment.
I contacted Animas's director of communication and received a very vague, "we're so sorry, cancel your order if you like, we understand." That was not acceptable to me. I want the pump. The pink pump. The one Grace's friend has. The one she said she can't live without. Tom suggested I get real angry-like. Call them up! Dig into them! Show them your teeth! I decided on a different course.
On Monday, I started flaming Animas on twitter. I have a twitter account and have just under 300 followers. Many of my followers are in the type one community. I was mad. I wanted to connect with any other parents out there going through a similar situation. I also wanted to unleash a social media storm. Within 5 minutes I received a note on twitter from Kerri. Keri is a type one social media star. I first came across her when Grace was diagnosed. I was googling looking for blogs and found her's. She's been type one for 25 years and has an amazing blog. I contacted her, explained Grace was just diagnosed, and said thanks for sharing her journey. The next day I received an email from her full of all the right words. I love Kerri and routinely follow her blog.
"I want to help," read her message. Kerri, in addition to being an awesome media presence, also works with Animas. I wasn't sure how she could help but I figured it couldn't hurt. To have someone reach out to you when you are at your wit's end felt nothing short of miraculous. I shared some details with her and called off my social media campaign. I would remain silent until I could see where things were going. Later in the day I heard back. Animas was calling CHOP. They would contact me the next day. I was confused and not sure what was going on. Kerri assured me she adored Animas, feels they're the best out there, and was confident she could help.
The next day I spoke to Grace's doctor. Animas offered a compromise. They can't release their latest model yet. But they would give us the older model and immediately upgrade it when the "Ping" is released. Our doc thought this was a good deal. It would get Grace the pump she wanted, keep us on schedule for pumping, and he still felt the company should be trusted. After thinking on it, I decided to take it.
Throughout this process Tom and I went back and forth on switching companies. We could have gone with another pump. Every time I brought it up to Grace she got really upset and agitated. This particular pump has a remote that I can use to dose her without really interrupting her meal. I wanted it and Grace wanted it. When you live a life of so many things being denied to you, I think it's reasonable to stick to your guns to get the things that are important.
Advocacy. If your child has any kind of chronic condition YOU have to step up to the plate. You have to be the one to make things happen. No is not an acceptable answer. The last blog entry I wrote, I mentioned "negotiated victories" and here we are. This isn't the ideal situation. We want the newest model. But it is A solution. It's a solution that allows us to move forward. It has made Grace happy. It has made me happy. It has made our CHOP team happy. A happy ending? Kind of. But an ending that is acceptable. For now.
Monday, March 19, 2012
Greetings from Frustrating Land
Frustrating Land is nothing like Disney so don't get all excited and start making plans. Frustrating Land is the land of powerlessness with limbo as its star attraction.
Our insulin pump order is on hold. It's been on hold for almost 3 weeks now. I first began the process of ordering the pump in early February. Our pump was about to ship when a leap year software problem delayed Animas from releasing pumps to anyone. No pumps have shipped since then. I get vague messages from the company. Our reps are frustrated by the lack of info. I'm frustrated right back at them.
What is particularly frustrating is that we went with Animas specifically because of their reputation for customer service. The competing pump (made by Medtronic) is essentially the same but includes a few different features. To explain the differences would require us to descend into nerdy diabetic speak and I won't take you there. When I call Animas to get an update I get an extremely vague, "We're working on that software fix. I'm sure it will go out late this week." I've heard that two times now in the past two weeks. I have a husband in software. It's what he knows. And he knows he doesn't like the sounds of this. It's shaking our confidence in Animas.
In the meantime Grace's sugar has decided to do something fun. We've never had problems with over night high sugars or lows. Sometimes Grace will have a really active day and we check her through the night to make sure she doesn't have a low sugar. The lows are the sort term baddies. The highs, the long term baddies. We don't want those lows. Some parents of T1 kids check them round the clock. I have so much respect for them. We have not been in that situation. Until now.
Grace's sugar has started spiking in the night. Grace used to be between 120-200 when I went to bed. This is perfectly acceptable to me. but lately it's been 360, 320, 290. This is not acceptable to me. If she goes that high for too long, the ketone monster shows up. Ketones are those ugly acids that build up in your system and make you feel poopy.
Consequently, I'm waking Grace every few hours to check her sugar and give her a shot of insulin to keep things under control. A pump would make this a whole lot easier to deal with. Not the lack of sleep-you still need to check their sugar but at least you can be a stealth doser. Plug the info into the pump and off it goes. Buh-bye needles. Grace's arms are so bruised from the shots. I know the sets for the pump are no picnic. One of my T1 mom friends said today her son's bottom (where he likes to wear the IV hook up for his pump), looks like a pin cushion. There is no real "solution" in all of this that gives you 100% satisfaction. Lots of diabetes management involves negotiated victories and reluctant losses.
Ironically, Medtronic (competitor to Animas) called and left a message today wondering if they could send us a pump. I have to confess I was REALLY tempted to pick up the phone and scream YES. But I have some inquiries in the pipe line and I want to see where they take us. I tweeted about my frustration this morning and one my T1 heroes is a rep for Animas and picked up our cause. She's trying to get our questions answered for us and I'm grateful.
In the world of good news, Grace had mentioned while watching Cupcake Wars that she wants to open an allergen free, low carb cupcake bakery for kids like herself. I LOVE this idea largely because I'm pretty sure she would hire me. On a whim, I contacted our town farmer's market and they agreed for us to be a "star business" one week in the summer and we can sell "Type One Cupcakes" as a fundraiser for CHOP or the JDRF. When I told Grace this, she rushed to my cookbooks and grabbed every cupcake book she could find. She's making lists of cupcakes, allergen free ingredients, and icing concepts. She is all over this. I love doing things like this with her because it shows we're not totally powerless in all of this. Here is great example of turning a really negative two weeks into something positive as we plan for the summer.
I'm giving Animas a few days to inspire confidence in me once again. If they can't do that, I'm moving on to Medtronic. It's our endo's favorite pump and they're ready to ship me one now. If that's what I have to do to get our management back on track, then that's what I'll do. A negotiated victory or reluctant loss, I'm not sure. But at least we'd get off the limbo ride.
Thursday, March 8, 2012
The Terrible, Horrible, No Good, Very Bad Week
I am so ready for this week to be over. This one has been a doozy.
I rarely cry anymore about diabetes. I get angry-really angry. I have days when I'm sad and struggle to get anything done. I spend my sleeping hours clenching my jaw and grinding my teeth. Most days I'm just flat-out frustrated. It's been a while since I've had a good cry over this.
Yesterday broke me. The week started off with Grace having insane blood sugar numbers. We basically spent a day in the 300 range, unable to get it to budge. It all made sense when Luke's nose started running like a faucet. Even if Grace doesn't actually get sick, the act of fighting off a bug brings on wacky numbers. My sweet Luke whispered to me anxiously, "I hope it isn't me making Grace sick." In that moment I hated diabetes so, so much. He's five. No five year old should have such worry. We spent a day high, and the next day dealing with low sugars. I hate the lows. They sneak up on you. They're dangerous. And for me, almost always unanticipated.
My phone rang at 10am yesterday. Every time my phone rings my heart jumps. It jumps again when I see it's school. This time it was Grace calling and she was crying. The birthday treat was not safe. It had soy and traces of tree nuts. I kept telling her I would run something up to school and she finally calmed down. When she did calm down she said, "Oh, and my sugar is 49." It was so nonchalant I almost missed it. She said she had a juice and was feeling better but I could tell she was mad, sad, frustrated-everything. For a 7 year old, this was the terrible, horrible, no good, very bad day playing itself out.
I took a deep breath and ran to find her a special treat she could enjoy. Practically every sweet treat out there has damned soy in it. I felt like calling Michael Pollen and shouting, "I NOW GET IT." I finally discovered peeps have no soy, no tree nuts--basically it's just plain sugar. Good to know for future low blood sugars. I ran them up to school and headed to Costco.
When you have a diabetic child you blow through a lot of juice--like you wouldn't believe how much juice we go through. When they discharge you from the hospital they should also hand you a membership to a discount club because that is where you will be spending your money. The trick to fixing a low blood sugar is 15g of carbohydrates. We prefer juice because it's fast. No chewing of sugar tablets. You just suck it right down. But finding juice boxes with only 15g of carbs is hard. Try looking the next time you are grocery shopping. Costco carries perfect little juice boxes that are exactly 15g.
So I needed juice. Sometimes Grace hates juice (she has to drink so much of it) so some time ago I picked up fruit chewies but the nurse told me Grace thought they were "disgusting." Sigh. So I added new a brand of fruit chewies to my list. And then I needed to add some kind of allergen-free sweet treat to the list because of all the school birthdays coming up.
That's when I lost it. Right in the middle of Costco. Pouring over labels, looking for allergens, trying to find the right amount of carbs. I just lost it. A little old Russian lady looked at me like I was crazy. I texted Tom, "I feel like there is an elephant standing on my chest." Just when I thought I would have to leave the store, I spotted giant packages of peeps. This solved one problem and my excitement over the brilliantly colored chicks helped me to calm down. People must have thought I was crazy--wow, that crazy lady really likes her peeps!
I spent the rest of the day angry. I was pissed that for some reason Grace's pancreas decided to kick in a little insulin that morning and didn't let me know I should back off her dose. I was angry it brought Grace to tears. And I was seriously angry at the parents who continue to send in treats full well knowing there are kids in her class--not just Grace-who can't enjoy those treats. And they can't enjoy those treats not because they might get rashy, or have gas, or hives-they could die. Am I being dramatic? No. My kid landed in the ER because of an allergen in her lunch. Do people really not care? I think, more often than not, that people are like me. As I become a more "solid" adult, it's occurring to me this is not the case.
In the short run, the peeps solved the problem. Grace burst out of school and jumped into my arms thanking me for the treat. In the long run, I'm increasingly frustrated that allergies and diabetes are impacting Grace's little world too much. It's a lot for a kid to go through day after day. It's a lot to watch her go through it day after day. It takes a toll on all of us: me, Tom, Grace, and even Luke. Sometimes I guess it's just best to accept this week sucked and try to move on.
Sunday, March 4, 2012
Rock Star:)
Grace loves to climb. She loves it so much I wonder if she actually is part monkey. Luke isn't that much of a climber. If it can't be tackled, thrown, or kicked, he's generally not interested. We thought it would be something different to try. There's only so many times we can go to the zoo. Or the Franklin Institute. Or the Academy. So off we went.
Tom endured the climbing lesson while I entertained the kids. Then they were ready to climb. As expected, Grace took off. Her first few climbs were on the short side. But then she got bolder and bolder and pretty soon was flying up a 30 foot wall. I watched as Tom belayed her. The usual things ran through my head:What if she slips? What if her sugar goes low? How will I reach her if her sugar is low? What if she falls? I was watching Tom watching Grace and I knew he had her. It's not like he's ever dropped her or anything. Except that once when she was a baby and it wasn't really his fault. Kind of. His eyes were locked on her and I swear I could see little grey hairs popping out everywhere. But I knew he had her.
Grace repeatedly went up the giant walls. A few times I locked eyes with Tom and he just nodded. We were both thinking the same thing. Nothing stops this kid. Seriously, nothing. She didn't slip or fall and we had no problems with managing sugar. She did awesome. We talked about it later and both agreed that seeing Grace do stuff like that just makes our hearts swell. Here is our girl about 30 feet off the ground:
Monday, February 27, 2012
Pump It
Grace loves the Black Eyed Peas so the title of this post goes out to her. . . .
I think one of the most frustrating aspects of diabetes is how technical a condition it is. When you say to someone, "I have cancer," people get that. They roughly know what cancer is and how it's treated. When someone says, "I have diabetes,"most people really don't get what that means and generally think Paula Deen is representative of the diabetes community. Explaining to someone what exactly diabetes is (and isn't) is ridiculous. "You see, you have this organ called a pancreas and it makes insulin. . . . . " And then try explaining how you manage diabetes. "You see, you need to take insulin. No, not a pill. . . .No you can't control it with diet. . . " And then I usually give up and conclude, "It just sucks."
The technology of diabetes is another doozy to explain to people. When we were in the emergency room when Grace was diagnosed, I remember a doctor who is also type one showing us her test kit. She wanted Grace to see that you can get it in all kinds of cool colors. Hers was purple and she thought Grace would like that. I remember her unzipping her bag to show it to us. I just stared, I had no idea what she was showing me. I remember thinking, "What the hell is all of this? What do you even do with all of that stuff?" Even now, when we're testing Grace's sugar in a public space, I don't think people are staring to be rude but it is very curious this whole technology thing.
From our first endocrine appointment, our doctor has pushed us to get an insulin pump. A lot of you have heard me talk about the pump and you may or may not have a good idea of what exactly a "pump" is. An insulin pump works like an IV. Here is a picture of one:
This is a pump. It's about the size of a cell phone-a little heavier. Attached to the pump is a tube that then attaches to Grace.
This is a medtronic pump but you get the idea. The pump delivers insulin via the tubing. It is completely awesome in that it eliminates shots. We will go from 18 shots every 3 days to 1 shot every 2-3 days. The site hook up lasts about 2-3 days and then you attach it to a new part of the body. Where the pump is not completely awesome is the learning curve.
The pump is a fairly complicated piece of technology. You have to learn a whole new vocabulary and a new approach to managing diabetes. It's damn intimidating. We were resistant for a while because getting the hang of managing diabetes has been a long process. We finally felt we had the hang of injections and things were going well. But every blessed appointment our doctor brought it up. And he got Grace fired up who would turn to me with her big, gorgeous blue eyes and plead for the pump. I'd say, "We're just not ready," Grace would beg and whine, and her endo would say, "I think you should listen to Grace." And then I'd shoot him the death stare. And feel like the worst parent in the world.
The pump offers us the chance for tighter control of Grace's numbers. Without going into too much technical stuff, the pump offers more precise dosing of insulin. We can also get better control of her night numbers. Sometimes when I check her in the middle of the night her sugar is high and we would normally fix that number but that requires a shot and I'm not waking Grace at 2am for a shot (or even a hug. She's just plain mean when she's sleeping). The pump offers us the ability to simply enter the information without disturbing baby bear's sleep.
We did our research and decided to go with a local company. Animas is known for their amazing customer support. I've read stories of people who needed a new pump because a screen broke and they simply drove to the company (in West Chester, PA) and there was one waiting for them at the front desk. Practically everyone who I've dealt with at the company wears an Animas pump. Our sales rep confirmed it's kind of like a cult. I like that. Cults are good. The animas pump comes with a remote. So Grace will wear her pump in a pouch kind of like this:
And then we use this remote to enter in her dose:
We like the remote feature because once Grace has her pump in a comfy spot, she won't have to fish it out for us to enter her info (which you can do if the remote goes missing). She begins eating, I count her carbs, enter a dose, and it delivers the dose. Talk about technology. . . .
So that's pumping in a nut shell. And this is where we are at. Animas is processing our paperwork and I'm sure there will be insurance issues because there always is. It's an anticipated fact of life around here. Grace is so, so excited. Personally, I'm mixed. I know this thing can really help us but it's something new and scary. It brings back lots of bad feelings from the summer of feeling overwhelmed and scared and angry. And I know as much as Grace wants this, the road ahead of us will not be easy. Wearing a pump 24/7 is going to be a huge adjustment--physically and emotionally. It's going to mean lots and lots of work (largely by me) to get a handle on this new piece of technology. But I think we've come far enough to know when to lean on our CHOP team and T1 friends for help. Grace will need her space and I'll need mine as we learn to accept this new aspect of diabetes management. In the meantime, Grace is kind of like Bart Simpson assaulting the mailman every day, "Where's my spy camera!"
Our next step is to get the pump and then head back to CHOP for another round of pump education. We'll walk out with Grace pumping saline for a week to make sure we have the hang of it before we "go live." I'm thinking around Easter we'll be up and running. Just in time to cover the peeps, chocolate eggs, jelly beans. . . .
Wednesday, February 8, 2012
Mistakes
I've been meaning to post something about our decision to move forward with an insulin pump for Grace. We have our first class next week. I'll catch everyone up to speed next week after class.
This blog is about Grace's courage and that spans a broad spectrum of experiences. Last week we had an experience that again demonstrated to me that Grace is much braver than the vast majority of adults I know. It also taught me a valuable a less in control.
At Grace's last allergy check up her peanut allergy had significantly gone down. This was amazing news. We had always accepted it would just be a part of Grace's life. On Friday, Grace's class celebrated the Chinese New Year with Chinese food from a local restaurant. I did confirm that that food was peanut free. At 2:45 the school nurse called to tell me she thought Grace's cold was taking a turn for the worse and she had developed a cough. I thought that was strange since she didn't have a cough when I last saw her. Thirty seconds later the phone rings again. The nurse is speaking quickly but I hear it in slow motion. Grace's back and stomach were covered in hives. Giant hives-the size of quarters. Her cough was not part of a cold. She was now wheezing. She was having a severe allergic reaction.
I live a minute from school so I rushed up there. The nurse wanted to hit her with the epi pen and call 911. Here's where I slipped. I said no. I would take her to the ER immediately. There was some back and forth about this but I was insistent. This was a dumb move. School was dismissing and I didn't want Grace's friends to see her go out in an ambulance. I thought to myself, "I can get her to the ER in 5 minutes-faster than an ambulance." I can hit her with the pen if I have to. I know the school nurse well. I know she knows her stuff. I should have listened. Maybe in the back of my head I was thinking, "I give the shots." I honestly don't remember.
Grace was kind of loopy-for lack of a better adjective. She complained her stomach hurt while Luke kept yelling "go faster mom!" I silently cursed my environmentally friendly car and it's inability to accelerate at lightning fast speed. I tried using Siri on my iphone to text Tom but unfortunately Siri was busy or something because she "could not process my request." A failure of technology all around led me to use words that I hope do not find their way into my children's vocabulary.
We got to the ER and they took us right back. Grace's sugar was up to 385. In the back of my mind I'm thinking, "Who cares." But it sent the nurses into a tizzy. "When was her last insulin?" "We'll get an order for insulin to cover the high!" "What was her number this morning?" It took every ounce of strength to not freak the hell out on them. I know they don't see a sugar like that every day but DID YOU NOTICE MY CHILD IS WHEEZING AND COVERED IN HIVES????? We got back to a room and saw a physician's assistant. She rocked it. She wanted to give an epi shot immediately but she was as cool as a cucumber. Wasn't concerned about that 385. She told me to run the diabetes show. She asked a few questions to make sure I had it covered and concluded-let us know what you need. I agreed and began to realize I had just played with fire by not letting the school nurse give the shot.
An epi shot is a big puppy. It would make most adults cringe. I silently gasped. The nurse did not hide the shot from Grace who began sobbing "No more needles." I insisted they administer it in her leg. They wanted an arm but I told them the poor kid wouldn't be able to lift her arm. They got her leg ready and all I could see were all the little bruises on her leg from her insulin shots. Grace was sobbing harder but not fighting it. I surprisingly kept myself together.
They began talking steroids and I immediately remembered Grace's T1 friend William who had to be put on steroids and what a nightmare it turned out to be. His sugar was in the 500 range and he was in and out of CHOP. I paged our edno at CHOP and I knew by the way he picked up the phone the situation was not good. His voice was urgent-his voice is never urgent. We discussed the impact of steroids. He was deeply concerned for Grace and ran through what to expect for the next 24 hours (crazy highs). He concluded by saying try to push them to keep Grace off steroids and get him back on the phone if I had to. He also said to page CHOP allergy (which I did not). I can only handle so many CHOP doctors at once.
In the end, the ER doctor kept Grace off the steroids arguing more harm than good would come from it. We would wake Grace for benadryl in the night and take it from there. The doctor spoke so softly to Grace. I was surprised how much time he spent with us. His ER was hopping-it was packed with patients and people crying in the hallways. He spoke in an almost whisper-like voice saying he understood what a drag T1 is and a food allergy. He was trying to hard to make a connection to Grace but she just stared at the ceiling and nodded every once in a while.
We walked out of the ER and Grace told me she likes CHOP's ER better. They have more games, check in on you more, and have better TV. And boom-she was back to normal. Squealing and laughing on the way home, demanding I play her music on the radio-while I stared numbly out the window.
I apologized to our school nurse and explained that I basically panicked. She completely understood but we both agreed that if there is a next time, she's going to administer the pen shot. In the end, no one is really sure what happened. There may have been peanut in the lunch. Or, it may be a new allergy. On Friday we go back to CHOP allergy to discuss what happened and maybe run a few more panels to see what's up. My take away from all of this is to give up a little of the control I have over Grace's health. I also took away a realization of just how many people care about Grace. Our school nurse called twice while we were in the ER to check on her. Her endo checked in all weekend by email to see what her numbers were doing and offer advice as to how to adress the highs and lows we were seeing. Her pediatrician received the ER report and called on Tuesday to make sure we were all ok. In summary: give up some control and let the people who care about Grace and have the medical training to help her do their job.
Wednesday, January 18, 2012
Community
I could go on and on about our trip to Disney but I'll keep it brief. We all had a really amazing time and it was so fun to watch the kids experience the rides, characters, and food. Grace's numbers were surprisingly good. We hovered in the low 200s and avoided ketones. We had one bad low sugar that left Grace extremely shaky but Tom swooped her into his arms and we rushed off to First Aid. Their staff was great. We just explained the situation and they asked if we needed a meter or juice (we didn't). Then they offered Grace a bed to rest while her number came up. And that was it. No checking in, no paperwork-they left us alone which is exactly what I wanted.
I mentioned this on Facebook but wanted to return to the sweet encounter we had with another diabetic girl. I carry our JDRF backpack because it has an insulated pocket for insulin if it's too hot. On our way out of the Animal Kingdom I heard this little voice say, "Excuse me? Does someone in your family have diabetes?" We turned around and there was the sweetest girl-about 10-with cute red, curly hair. She and Grace hit it off like they were eternal best friends. Lily's mom assured us it does get better and Lily was proud to show off her "Pod" insulin pump. She also told Grace all about diabetes camp and what fun it is to meet lots of other kids just like her.
I was so struck by this encounter for a number of reasons. One-practically every kid we meet with diabetes is amazingly articulate about their condition. Lily had no fear of approaching us, breaking down how you use the pod pump, and all the cool things her remote did. She was nothing short of an advocate for diabetes normalcy. She was just oozing, "HEY-you're just like ME!" And Grace beamed. Grace repeatedly asked if Lily stayed at our hotel and how great it would be to see her again.
Pushing into the new year it's become very clear to me that as important as my diabetes community is, Grace needs one, too. We have a few options including a new kids' support group in our area and reaching out to the JDRF. Camp also sounds great but even under the best of conditions, I'm not ready to let Grace go to an overnight camp. This will be open to discussion.
Second, I'm learning just how important community is to the diabetic families we meet. Grace has been increasingly frustrated with the insulin shots. This frustration seems to come and go and we're knee deep in it now. She is *really* fixated on getting an insulin pump. We're totally fine with that. I think we've reached the point where we can push through the classes and tackle this piece of technology (I'll post later on what the pump is, how it works, etc.) But last night was bad at bedtime. Grace had lots of tears and is clearly frustrated and tired of all this nonsense. After I settled her down and swore a solemn pinky promise that we would get the pump, I headed downstairs to find this on our dry erase board in the kitchen:
"I HATE DIABETES."
Grace writes all kind of things on the board. Usually she chooses peace signs, hearts, butterflies, sweet notes to me. I swear this one shook me hard. I was still thinking about it when I looked at my messages and saw I had one from a mom who has a young son with type 1. She needed to vent. It had been a rough night. Her son, too, was just tired of the whole thing. Grace was crying because she wants a pump. Her little guy was tired of the pump. I've never actually met Alyssa in person. We were introduced by a mutual friend. But the great thing about this community is you don't need to actually meet that person face-to-face. You just need to know someone is there to listen. Not to judge. Just a set of understanding ears.
Reaching out is such a huge part of the support network. None of us is superhuman. Somewhere out there, there is a parent and child having a rough diabetes day. Last night that was me and Alyssa and my friend Lisa. Lisa's son is currently at CHOP dealing with high blood sugar and a confusing diagnosis of pneumonia/asthma. I know she was having a rough night. I had a rough morning with Grace's low blood sugar and her reluctance to let go of my hug to head back to class. When you share these stories with people in the community they nod because they know. This is not to say those of you who don't have a diabetic child don't know. But it's that connection thing I wrote about last month. The connection is huge and it's what helps us all survive day to day.
Thursday, January 5, 2012
Honeymoons and Vacations
We had Grace's 3 month check up today and I was dreading the blood work. December completely sucked. Her numbers were ridiculously high and I felt like I spent my days chasing ghosts. We adjusted her nighttime insulin, her carb ratios and then I began to notice how much insulin we were going through. In the back of my head I wondered if our "honeymoon" was over. The honeymoon period is when the diabetic's pancreas still produces some insulin. Eventually the pancreas tires of the relentless attacks and stops producing insulin. I wasn't sure if Grace's highs were a function of all the sweet Christmass goodies or the honeymoon ending. Ends up it's the honeymoon.
Grace's blood work was surprisingly good today. It took nearly half the appointment before the result was in so I sat there in a panic wondering if they tell the really bad patients at the end of the appointment. Or something like that. I get irrational when stressed. Grace had a 7.1 on her A1C. We both got an immediate high five from the doc. Our goal from the last appointment was to eliminate a lot of dangerous low blood sugars she had been experiencing and we did just that. Our doctor was really, really happy with the score.
They have this nifty program where they download all the numbers from your blood sugar meter. I was saying how frustrated I was trying to figure out what the heck was going on. He took one look at the data and started nodding and wincing and tilting his head in a way that gave me the "oh crap" feeling. He said the numbers told him that the honeymoon was over. I absolutely knew this was coming but there is still something so awful about hearing a major organ in your child's body has given up. The doctor nodded sympathetically as he told me but I kept it together in front of Grace. I guess maybe it's the finality of it. And I guess a lot of parents get upset given the way he delivered the news.
And then we discussed Disney and everything changed. The doctor was excited and his boss (the head of the practice) is a big Disney guy. When we reviewed Grace's case Dr. W. was raving about all the rides we need to hit and told us to avoid others based on lines but then caught himself. He shared (and I already knew) that Disney makes accommodations for kids like Grace. Not necessarily a "go to the head of the line" but a special priority when getting on rides. I said I felt a little bit bad about taking advantage of this because we emphasize all the time "You are just like the other kids." Dr. W. (who is not known for his bedside manner) told me to stop being ridiculous. To remember every sleepless night we've had. Every cry over a scary low sugar. The anger and frustration of all of this. "Put you and your family in the front of the line. It's what Walt wanted. You all deserve some fun." I laughed and then took a deep breath so I wouldn't cry in front of Grace.
I find these appointments incredibly emotionally exhausting. I stress for days ahead of time over the blood work score wondering if I'm doing everything I can to manage this beast. I stress going into CHOP and seeing all the other families with their own struggles. I told our doctor this and he just kept reinforcing what a great job we're doing and to try and relax a little. "You got this" was what he repeated over and over. I wonder if that self doubt dissipates over time. Do you get increasingly confident that "you've got this." Or is the stress a constant-something that never really goes away? I do know I won't let it in next week at Disney. The doctor explicitly told Grace to eat plenty of sweet treats and have fun. And to treat mom to an ice cream. I think Grace and I will seek out the biggest ice cream sundae we can find and celebrate all our hard work:)
Subscribe to:
Posts (Atom)