January 16, 2016: The Highs and Lows of Everyday Life

I'm just going to say that this week was a pretty good week. I called Duncan's nurse, Patricia, to give her his glucose levels. Patricia is awesome, we go through his levels together over the phone so she can adjust his insulin intake accordingly. Duncan's glucose this week was actually pretty good. Let me explain what pretty good means... Duncan's range is between 100 and 200, they explained to me that they want his range to be higher than the "normal" range of 80 to 100 because his brain is still developing and he needs that glucose to help with the development. If his glucose level gets down below 80 I need to treat it as a "low" meaning he needs more sugar in his system. If his glucose levels get above 200 I need to treat it as a "high" meaning he needs more insulin in his system. Normally Patricia doesn't worry too much about his levels until they reach the 250-300 range, then we have to worry about keytones, which is something to explain for a whole other day. Duncan has never experienced keytones since I brought him home form the hospital so I don't worry too much about that.

For the most part Duncan is a pleasant kid, he's active, happy, and playful. He likes to make faces and run through the house like a mad man. Duncan has been all over the place this week like any other "normal" toddler. I probably shouldn't say "normal" because his diabetes is "normal" to him now. We've gotten pretty much into the rhythm of things since he was first diagnosed, he knows I have to check his levels before he eats and is usually pretty good about letting me prick a finger to get a sample. When his level is low, we drink some juice and try again 15 minutes later. If his levels are high we count that into his insulin using his "sliding scale". If his levels are in range we don't worry.

The hardest is when he's low, he gets really hungry and wants to eat everything in sight! Mostly carbs, and sugars. He whines and cries and rolls around the floor like he's having a tantrum for no apparent reason. When his levels are high, he still wants to eat everything he can get his hands on but it's usually the proteins. He wants cheese, meats, or nuts and he stuffs them in his mouth like he can't get it in fast enough. Most days I wish he could talk and tell me what is wrong when his sugar is not in range. I know the symptoms to look for, but it's really hard to know if he has a headache or if he's feeling dizzy if he can't tell me himself.

My 5 year-old asks me at least once a week "Mom, when is Duncan going to not need anymore shots?" I have to explain to him that Duncan will be getting shots the rest of his life, unless they find a cure which is what we pray for every night. Duncan gets pricked on the finger an average of 8-10 times a day, some days he cooperates and lets me do it, some days he's ornery and wants to be in control of his checks and balances. They told me as a teenager it gets harder because he'll start wanting to do it on his own, and he'll start hiding his highs and lows from me because he will want to be in control of his illness. They've never met a determined 2 year old who wants to be left alone with a loaf of bread for 5 minutes!

The other day Duncan was acting really weird. He was in the dinning area and was really quiet. We all know the saying when a toddler is being quiet you know something is wrong, so I walk over and try to find him... he's not there... maybe I was wrong and he went down the hall to his room? I walk down to his room and no Duncan... I walk back to the dinning area and there under the table sitting with his back to me is my son chowing down on a loaf of bread! WHAT ARE YOU DOING!?!?!?!? Don't you know what that will do to your sugar? of course he doesn't, he's 2 all he knows is he wants food and he wants it now! I swear this kid is like Houdini when it comes to food. It doesn't matter how well I put it up, he WILL find it and somehow find a way to eat it. So I check his sugar, it's a little low only in the low 80's but enough to give him a little snack.

Get him in his high chair, hand over the cheese and pretzel and 10 minutes later off he's running to go destroy whatever new "thing" my older boys have built. I hear him run down the hall then it's 3... 2.... 1... "DUNCAN! NO" another castle was just destroyed by our very active, sugar free, T-Rex.

January 10, 2016: A Diabetic Family

While in the hospital I had to meet with a nutritionist to "help" me find healthy diet choices for Duncan. She told me that parents don't realize the life changes that come with a child who is diagnosed with diabetes. I kind of waved her off. We were healthy eaters to begin with, my husband likes his junk food occasionally but for the most part we don't keep it in the house. I was taught to cook from scratch, I know how to use noodles to make mac-n-cheese with real cheese and milk, I love cooking beef stew in my crock pot, and I never use the prepackaged stuff. I find it to be very fattening, high calories and it just doesn't fill my boys' stomach. I already used whole wheat noodles instead of white noodles and brown rice over white rice. So our eating habits didn't really change too much.

The only thing that really changed for us was eating the holiday candy in front of Duncan, and portions. My kids are still growing so I never really paid attention to how much they ate, as long as they were eating enough. Now I have to keep track of EVERYTHING Duncan puts into his mouth. Last night we had a good dinner, and I gave him the insulin he needed to cover it. He woke up two or three times screaming like he was in pain. At first I thought something was really wrong, I had just recently read and article of a little girl who recently died because she swallowed a penny battery. My thought raced through every thing he at yesterday, and maybe things he could have picked up on the floor that I just didn't see... I remembered that we don't even have penny batteries in the house. I stuck his sippy cup in his mouth and he started drinking the water, laid his head back down on the pillow and went back to sleep. About an hour later he woke up screaming again. I went in to see if he needed more water and checked his blood sugar this time, he was in the 300's no wonder he was miserable. I've gone on record as saying I'd rather deal with highs than deal with lows which is true, but I still get stressed out when he's too high. He woke up again an hour later so I was back and forth most of the night

I remember when my husband and I went to our basic training class in October, one of the nurses told a story about a mom who had two daughters that both had type 1:
"Her 8 year old came in with a blood sugar in the 400's, and I asked her what she had for breakfast that morning. The little girl turned to me and said "Cocoa Puffs" I looked at the mom and said to her "Why would you give your daughter Cocoa Puffs for breakfast when you know she's diabetic?" The mom looked at me and said "I didn't give them to her, the Cocoa Puffs are mine, she just found where I was hiding them." I said to her "you really shouldn't keep that kind of thing in the house with both of you children dealing with diabetes" the mom looked right back at me and said "I don't see why I have to suffer just because She's the one who has diabetes..." I was shocked. About a week later both of her daughters were in the hospital with high blood sugars, and as I walked into the room to greet them this same mother threw her arms around me and started to cry. "I don't know how this could have happened" she said "you know more than anyone that I would do ANYTHING for my daughters!" I couldn't hold it back any longer, I had to be taken off their case because I just started screaming."

This story really shocked me. I felt bad for those kids, but most of all it made me realize how important it is to eat clean with Duncan in the house. He's still a toddler so he's getting into everything as it is, I don't want to end up in the hospital for four days again, because I was too selfish to keep snack foods around the house. We all know as a woman it's hard not to store chocolate around the house for when you're dealing with stress.... but that is something I am definatly working on.

The Holidays

Our biggest adjustment was the holidays. I love baking, and I honestly believe everything in life can be learned through baking. What was I going to do now? I usually go all out for Thanksgiving and Christmas. This was going to be a learning experience for our entire family. The doctors and nutritionist in the hospital told me not to stop our holiday traditions, to keep our life as "normal" as possible. Halloween came we dressed up and went trick or treating. The JDRF (Juvenile Diabetes Research Foundation) put out a very helpful guide for Halloween for kids with type one.

Halloween wasn't too much of a headache this last year. I thought I handled it pretty well! Yes, Duncan's sugar was up to the 400's, and I found out that night, that no matter how much I watch him, he is going to find a way to get what he wants. If he knows he's not supposed to have it, he will sneak it.

Thanksgiving was a little different for us this year. I still did most of the baking I usually do, I cut it down, and made one or two more "low sugar" pumpkin pies than I normally make. Our Dede is a type two diabetic so we're pretty used to making "low sugar" pumpkin pies. Duncan's blood sugar was really high during Thanksgiving, in the 400's and 500's at times. He wasn't feeling very well though and I realized when he's sick his blood sugar will spike, no matter how well I keep track of his carbs.

Christmas was a learning curve for us this year. Santa didn't fill stockings with as much candy this year- A little chocolate for the older boys and sugar free candies for Duncan. There were more toys and games filling their stockings and the boys loved every minute of it. I thought this year Christmas was going to be harder when it came to the sweets, but my boys seemed to understand the importance of Duncan's condition. My 7 year old gets really upset when he sees Duncan eating anything. He has decided he is the "food police" and will come in and make sure whatever Duncan is eating is something an adult gave him, even if it's just a carrot stick.

I think the hardest thing about the holidays is getting together with family. 2015 was our first holiday season dealing with Duncan's diabetes I was still learning how to count all the carbs I was anticipating him eating, as well as counting all the carbs he actually did eat and I had to teach it to family as well. We made it very clear to everyone we came in contact with that they were NOT to give ANYTHING to Duncan unless they had permission from me to do so. My mother in-law is very strict with that rule. She knows she can give him cheese and meat, but she still made sure to ask me before letting him have anything to eat.

My husband comes from a family of 6 children.  There are now 4 spouses and 7 grandchildren with one more on the way.  We all got together this year for Christmas and it was a mad house.  Of course my first priority is Duncan and what he's putting in his mouth, but when you have that many people in a room and a lot of chaos something is bound to happen, and sure enough Duncan found some popcorn and started stuffing it in his mouth.... needless to say his sugar was up in the high 300's low 400's that night. 

I now know the holidays are going to be the trickiest to deal with. My husband and I don't usually keep candy and junk food around the house because we know how much of a temptation it is for us, let alone our children. The holidays are different though, it's hard to get through them without baking my traditional Autumn Harvest Pie or cookies for Santa. I know by next year we're going to be experts... but this year I'm just hoping we can get Duncan through Valentines Day without him going into a sugar coma.

January 7, 2016

Yesterday I had an appointment with the endocrinologist down at the clinic by Loma Linda. I'm used to mostly dealing with the nurses and not really seeing his doctor. She only came in for about 10 minutes, talked to me about how he was doing, looked at his numbers after they downloaded his meter, and shook Duncan's hand. I was left with the nurse, A really great nurse who's name believe it or not was Patience.

When I got the letter in the mail last month about his appointment they told me to anticipate it to be 4 hours. I thought that meant I could be in the waiting room for about 2 1/2 to 3 hours waiting to be seen. I got down to the clinic at 1:16 for his 1:00 appointment, the traffic going down was crazy with all the rain we got, and I couldn't go faster than 40 mph on the freeway. I checked in and hadn't sat down for 5 minutes when they called us in. Yay, I'm probably NOT going to be here for 4 hours. I talked to Patience, then the doctor, then the nutritionist, and then the social worker was supposed to come in, but she got held up so she said she'll see me next time because it was so late. I was alright with that because by the time the social worker got to me it was 5:19... Yeah... it took 4 hours.

Today was a hard day. I thought Duncan would be a little cranky because of yesterday. It had been such a long day for him and he was such a trooper the entire time. They told me he was the cutest patient they ever had (which I'm sure they say to everyone). He woke up in a good mood and had an excellent morning running around terrorizing is brothers. We all ate breakfast, I measured out insulin like I always do, and he ran around some more. Checked his sugar at nap time, and it was at 68. That was too low, so I gave him some juice. I checked him 15 minutes later and he was up past 200, which of course is too high. I put him down for a nap and let his blood sugar settle. 

Duncan woke up in a happy mood running around. Within 5 minutes he was rolling on the floor screaming and would not let me comfort him. I checked his sugar again and he was at 33. 33! I'm not ashamed to say that a part of me panics when his sugar gets below 80, but it has never been as low as 33 before, so I rushed to get him some juice. He drank the juice and still wouldn't stop screaming... 15 minutes later I checked him again as I'm supposed to do and he was only up to 56, time for more juice. He wouldn't take it. I ran and got a piece of Christmas chocolate and he ate it happily. 15 minutes later he was up to 98 and was his happy self again. He ate his lunch and I got my Duncan back.

The highs I can deal with, the lows are what scare me.

Duncan's Story

Tuesday September 15, 2015 we were enjoying our dinner outside in the nice weather. We live in the high desert of California, where the weather doesn't seem to get crazy until the end of September or the beginning of October. Most of the time we have a mild October where everyone is wearing shorts and tank tops, but Halloween night is always freezing cold. My parents and I are sitting out at the dining table outside when Duncan my 18 month old comes over to me and wants me to hold him. He's freezing cold, so I get a blanket and wrap him in it while my two other boys are running around playing whatever game they came up with. I put Duncan to bed early because he didn't seem like he was feeling well.

About an hour later I put my other two boys to bed. Cyrus, my seven year old came out about ten minutes later, and to tell the truth I was a little frazzled because I mainly thought he was getting up to ask for one more this or one more that. Nope, he comes out and says "Mom, Duncan threw up." Oh great, that's why he didn't eat much at dinner and why he wanted me to hold him in a blanket, he's sick. I cleaned him up, gave him a warm bath to help him relax, changed his sheets, and put him back to bed. 
The next day was spent cleaning up throw up, changing him multiple times out of jammies and dealing with a flu bug. He wouldn't eat anything, so I just made sure he was getting the sugars back in his system, and wasn't getting too dehydrated. Thursday was the same, he was just sick.

My poor little boy just didn't feel well. I had decided that if he wasn't better by Thursday night I would call his doctor on Friday morning and see if there was anything they could do. His breathing was rapid, but he had also suffered from RSV at the age of 6 weeks and had to be hospitalized for 4 days at St. Mary's. September is the beginning of RSV season, so he very well could have the beginning of it and I didn't want to take the chance. I took my older boys to school and had breakfast with a friend who told me I should call Thursday morning instead of waiting. "It's a minimum day today", she said, "and if you wait and call tomorrow, you may not get an appointment until Monday and he could be over it by then.  Then you have wasted a trip. But if you call today, you could get him in this afternoon after the minimum day, or at least get him in tomorrow.  If it were me, I just wouldn't take the chance." I had to agree with her, and because of her advice I will forever be grateful to her for convincing me to call my pediatrician. I got home and I called. 

I had a conversation with the nurse who told me it did sound like a flu bug. She told me there was nothing they could do about it, and it probably wouldn't be a good idea to bring him in because by sitting in the waiting room he could catch something and make it worse. He didn't have a temperature which is one of the reasons why I was going to wait until Friday to call. The nurse told me to keep doing what I was doing, keep giving him juice to keep the sugars in his system, and make sure he's not getting dehydrated. I put the phone by his nose and mouth so she could hear his breathing, and she told me that he's not wheezing so I shouldn't worry too much about RSV. "If he becomes unresponsive", she said, "bring him in as soon as possible." So that's what I did, I checked on him every hour got him up for meals that he didn't eat, and made sure to change his diaper and keep him hydrated.

At around 7:30 pm that night my husband came home from school.  He was in a nursing program. We ate dinner, and I realized I hadn't gotten Duncan up to eat, so I went in to wake him up. He groaned and kind of fluttered his eyes open. I ran him into my husband and said to him "Tell me not to worry! Please tell me not to worry!" My husband pulled out his stethoscope and listened to his lungs. He said his lungs are clear but his heart is racing. "First he needs a blessing, go get your dad." (We are LDS and when a member of our family or congregation get sick we give them a blessing for health). "Then he needs a doctor, we need to get him to the emergency room." My dad and I packed Duncan into my truck, I sat in the back to keep an eye on Duncan and make sure he stayed awake, and my dad rushed us to St. Mary's Medical Center.

We got to the emergency room, I got into line to check in and Duncan was a greenish grayish color. I got to the window and the man behind the glass looked up, saw my son and said, "Mam, your son needs to get back here NOW!" He started talking to nurses to get a bed ready and told me I needed to get him on a gurney. Six nurses came over and took him from me. Six nurses took my baby and started poking him with needles, tried to get blood and start an IV. I had a doctor came up and ask me what happened, so I started from the beginning, I started from Tuesday night when he was fine and running around, and out of nowhere started throwing up. I told him about calling the pediatrician that morning, and checking on him every hour. I told him that when I found him unresponsive I brought him in. "If you found him at around 7:30 why did it take you and hour to get him here?" "Well, I live 45 minutes away from the hospital", I responded.  There was a woman at the window when I got here and she took about 20-25 minutes to get her point across..." I did what I was supposed to do right? I understand this man probably sees a lot of awful things in the ER in the high desert, but I was a good mom right? Didn't I do what his doctor told me to do? Honestly all I could do was cry. I didn't get hysterical, I didn't scream, I asked the doctor, "Is my son going to be alright?" "I don't know" was all he could tell me, "Your son is in critical condition, you should have gotten him here sooner." I told my story to 6 different people that night, and wondered every time what I had been missing, what could I have done differently? It was the flu! Just a flu bug... Right? 

After what seemed like forever which was probably only about 30 minutes to 45 minutes with my dad texting me from the waiting room every 20 minutes to see if there was and update, the ER doctor came back. "Ok" he said "your son is in what we call DKA or Diabetic Ketoacidosis.  Your son has type one diabetes." "No he doesn't" I laughed a little, seriously I laughed a little bit. "He can't be diabetic, my husband and I eat right, my husband is 6'5 and weighs 216 pounds, I don't keep junk food in the house, and we grow a lot of our vegetables...." the doctor looked at me and said "your son is diabetic. It's type one, his eating habits have nothing to do with it." "But it doesn't run in our family", I added.  "It doesn't have to run in the family anymore. Your son's blood sugar was over 600.  He's in DKA and we don't have the equipment to help him, so I've put in a call to Loma Linda Children's Hospital. They are sending a helicopter and should be here within 45 minutes. They are sending a crew of six so you will not be able to fly down with him. I'm going to be over at the desk if you need anything, just let one of the nurses know and I will be right over to talk to you". "But why was his sugar so high? Could it be because he hasn't eaten anything in four days, and I've just been giving him juice to make sure the sugars are staying in his system?" "No your son is diabetic. I will be over there if you need anything."

About 45 minutes later a nurse came over to me and told me the crew from Loma Linda was here to air lift Duncan down to their hospital. The ER doctor came in with her and said to me, "The crew from Loma Linda just landed, there is a couple things I want to remind you about. You can not go with them on the helicopter, but the most important thing is your son is going to be fine. You did everything right. You called his doctor, and you did everything they told you to do. This is not your fault. No on knows why this happens it just does. You are a good mother and you did everything right. If you had not been checking on your son every hour, and brought him in to us tonight, he would not have woken up tomorrow morning. You are a good mom. Remember that. Good luck and I hope everything works out for you." The crew came in, introduced themselves, and eased my mind the best they could. They promised me he could take his stuffed dog with him to comfort him, and that they would strap it in so he didn't lose it. They gave me the instructions for when I get down to the hospital and where to go. They took one more blood test, and Duncan's sugar had dropped to the 400's and told me they would be down at the hospital in 20 minutes.  It was an hour drive for me. I kissed my baby goodbye, and watched them strap him into a bed and take him away. They promised me my boy would be safe and I could go right in and see him as soon as I got down to Loma Linda.

 My dad drove me down to Loma Linda where Duncan and I spent the next three days in the hospital. There was a nurse in the room with us at all times to check his insulin and his blood sugar every hour. Friday morning came and the nurse told me I would be meeting with the insulin instructor for about two hours. She would be going over how to administer his insulin once we got home. I met with a woman named Barbara who also had diabetes but hers is type 2. She stayed with me for two hours answering my questions, and making sure I was comfortable dealing with checking his blood sugar myself. By Friday night his blood sugar was at 180, he could be taken off the insulin pump and start eating solid food. Saturday morning I ordered Duncan his breakfast, and got to meet another awesome woman who was a nutritionist. She went over foods and carbohydrates and how to count out his carbs. She gave me some referencing material to help me out. The nurses told me it was very uncommon for a child Duncan's age to be diagnosed with diabetes, type one or type two. The only way they can catch it is if he goes into DKA.

The nurses told me I was the calmest parent they ever worked with when it came to the news of his diagnosis. I thought back and told them, "I'm pregnant, and last week my husband came home from school, and I had told him that I had just finished watching an episode of CSI where they were saying on the T.V. show that excessive thirst is a symptom of diabetes. Duncan had been getting me up every night for about a week and a half for water. He'd drink about two 6 ounce cups of water and go back to sleep. I was also changing his diaper every hour because he had been peeing so much. My husband said so? and I said "isn't that a sign of diabetes?" and my husband said "it's your pregnancy hormones babe, it's hot outside, and he's just thirsty. You're probably just overreacting." so I took it as that and walked away." The nurses thought it was funny and said, "Mother's instincts are amazing."

Sunday came and a doctor came into the room and told us Duncan could go home. His blood levels were great and I seemed to be handling everything well. They were confident enough to send him home for me to take care of. I called my dad and let him know the good news, but it would take him about two hours to get down to us. He was in church and the traffic was awful. The I-15 was under construction, and everyone was coming home from Vegas.

We left the hospital around 7:00 pm, and got home around 8:00 pm. I was nervous to get started, and our first night home was a little rough. I was still checking on him every hour, and he woke up at 2:00 am and cried for an hour and a half straight. This was my life now. I had jumped in with both eyes open. I started teaching my husband everything I learned, and made sure family members knew about his condition. We sat our older boys down together and explained what was going on with Duncan now and they became very protective over what he ate and that everyone knew his health.

So started our life with diabetes.