Crisis avoided

Well we officially had our first scare with Ketones. Here is how it all went down....
We have finally decided to put our feet down with Luke's poor eating habits. The kid only eats peanut butter and honey sandwiches, pizza, and grilled cheese. It has seriously become a problem. So a few nights ago we decided that Luke would not get any of his "special" dinner meals. He was given the choice of chicken nuggets or the grilled chicken I made. He said he was going to eat the chicken nuggets, but did not. of course his sugar started to drop. So we suspended his pump for an hour. Then did a -20% temp basal for a couple of hours. We thought that would bring his sugar up enough to get him through the night, and it did. At one point in the night Luke's dexcom receiver alarmed that he was high. I kind of ignored it and figured his sugar would come down because his basal was kicking in. Well maybe it went off again and I thought the same thing at some point in the night but I honestly don't remember. Well, the next morning Luke woke up soaking wet. His bed was soaked, and his clothes were soaked with urine. He came down stairs and didn't look right. He starting coughing and gagging like he was going to throw up. I checked his dexcom, he was over 350 for long time throughout the night. I checked his blood, he was 398. CRAP!! I checked for ketones. His meter read 3.8. CRAP!! We no longer use the urine test strips because obviously its very hard for a 4 year old to pee on command, plus the new blood ketone test is the new technology. If you are not familiar with the blood ketone tester (as the Doctor on-call was not, which made me furious) if it reads under 0.6 you are fine, if it reads over 1.5 you are advised to seek medical attention immediately. Yep, 3.8. So I called the pediatric endocrinologist on-call at the hospital. She was very nice, but this is the first time this has ever happened to us and I didn't have the patience for her. Maybe she was a resident which is fine, I get it, everyone has to learn sometime. I did find it a little annoying that she didn't get to the point to tell me what to do, but spent a lot of time asking about all of his basal settings and insulin to carb ratios. Then she asked about the ketones. I told her "3.8." She did not know what I was talking about. She only knew about the urine test. Now, I'm sorry but come on! I've had this type of test in my possession for a year now, how could this doctor not know what I was talking about?
While I was on the phone she was asking me if he was throwing up and if he felt sick. At that moment, he was fine. I even asked Lukas if he felt ok. He said he was good. Of course the minute I hang up with her he goes into the bathroom throwing up and crying. I have to admit, I was really scared. I was extremely emotional. All I kept thinking about was that I did this to him. If I would have acknowledged the alarm at night he would have been fine. A few minutes later the doctor called back and she gave us the option to either give him a shot or bring him to the ER. What would you do? Of course I gave him a shot! Within an hour the ketones came down to 1.8 and in another half hour they were gone. WHEW! Crisis avoided. By 10:30 am Luke was better and we were back to our normal activities!

Yay for an awesome beach day!

It can always be a little tricky dealing with diabetes at the beach. We usually have to disconnect Luke's pump because we would hate for anything to happen with the waves, but that isn't always a good thing. If Luke's sugar is on the high side he should keep it on. But thankfully yesterday everything worked out great. When we got to the beach his sugar was high, but all the activity kept him in a normal range. He ate lunch, had juice boxes, and snacked. We hooked him back up to bolus for food, but he stayed within the 100's the whole time. Sunday Funday was a success!!!

Luke's Necessities

I thought I would do a little informative post on all things regular and necessary for Luke. A lot of people ask... Ho do you do it? How do you give him insulin? Aside from that, a lot of people don't realize how much "stuff" is needed to keep Luke, and I hate saying this but, alive.
Here is a look at our stock of supplies

In this cabinet I have numbing cream that we use to change his site. We have alcohol wipes to keep everything clean. There are extra meters. There is a ketone meter along with test strips specifically for that type of test. There are drums to re-load his lancer, and extra lancing devices. There is extra tape and bandages for the times he will get wet or in case something comes loose and its not time to change it yet. There are the pump supplies to change his site and re-load his pump with insulin. There are replacement sensors for his continuous glucose monitor.There are extra syringes for the times there is something wrong with his site and he needs an injection. There are insulin pens, in case for any reason the pump doesn't work and we are waiting for a replacement.  And there are extra lithium batteries, we can't forget batteries! Not to mention the boxes of supplies in the basement... this is just what I can store upstairs that needs to be easily accessible.

This is Luke's life support. Everything needed is on this table.

This is Luke's pump. This little blue guy holds his insulin and has all of his carb ratios as well as his insulin sensitivity factor programmed into it. This device is awesome!

This is one of the few pouches that holds his pump. He also has a superman one, a camouflage one, and a special stretchy one that is great for when he is active. If we could only find a ninja turtle pouch!!

This is the site where he gets his insulin. We alternate between butt cheeks and belly sides.

The blue piece detaches easily when we need to disconnect, like when we are at the beach and we don't want anything to happen to his pump. Or if his sugar is low and he is very active, we usually disconnect him. Thank goodness we have this pump, because I believe I forgot to mention he doesn't get injections because of this!

This is the Dexcom G4 Platinum. Sounds pretty amazing right? I love the name of it. This little thing is the receiver of his continuous glucose monitor. This bad boy gives me a blood glucose reading every 5 minutes. I have alarms set for when his sugar goes above 250 or below 70.  This thing is a godsend, not that it is 100% reliable, but it is pretty darn close. This means that I don't have to set an alarm every 2 to 3 hours at night to check his blood. YAY!!!

This is the computer part of it. This is "the brain."

Here it is on his little heiney. We only put it on his butt because it is a little painful going in and it stays on for a week.

And this is the contraption that I insert it with. After all this wouldn't you think I could be a nurse?
I know it seems like a lot for a 4 year old to deal with, but Luke is awesome! He does complain, but who wouldn't?!

 

What do you do when your son says....

I don't want diabetes anymore. Luke is getting older. He knows this isn't going away. He wants to be a normal child. I see the way he looks at kids when they dive into a bag of cookies or eat pizza, cake and ice cream at a party. Can Luke have these things? Absolutely! But first he has to check his blood, we count the carbs, then give him insulin...then he can finally enjoy. And we then hope that we calculate correctly and he doesn't end up with high blood sugar in the hours to come. It kills me when we are doing all of this and he is staring at other kids rip open their treats and dig in. I see his leg tapping like "come on mom, hurry up" followed by "can I eat now, can I eat now?!" its not so much that this kills me that he can't have these treats, because he can. It kills me that it is acceptable to let our children eat garbage like its the last supper. Our society has created this mess. Yes, my son has a disease and it has opened my eyes to a lot of things in life. I am so thankful it isn't something worse.  But, regardless of his disease, I would not let my kids have junk food on a regular basis. It makes me very sad when Luke tells me that he doesn't want diabetes anymore, or that he doesn't want to wear a pump or change his site or wear a sensor. It breaks my heart! I don't know what to say to him, except someday we hope for a cure. What makes me even more sad and bitter is that he didn't ask for this, we did not do this to him. When I see people with type 2 diabetes who are overweight, don't exercise and shovel garbage into their mouths on a daily basis, I cringe. Because of these people who are doing this to themselves, I get asked stupid questions like, "did he have a lot of sugar when he was young?" Or "well he isn't fat, how could he have diabetes?" Another good one is "maybe he should exercise more, did you sign him up for soccer?" I'm at the point now when people ask me this I don't have the energy to explain, I just get angry. These people with type 2 diabetes, they did this to themselves. They had a choice and still have a choice. At 3 years old, my son did not have that choice. He was given a lifelong disease. I'm looking for a way to not feel so bitter towards those people who do it to themselves. I'm looking for a way to go to a restaurant and see a family of overweight individuals gorging themselves and not think "bet they don't have diabetes." It just isn't fair.

Last year

Last year was not my best year. I was very bitter, and negative. Of course, someone never realizes any of this until after the fact. But I acknowledge my faults, and this year I have been doing what I can to make things right. I've been reflecting on the differences of 2012 and 2013. Last year was draining. Last year I had a lot to learn. Last year I had my third baby for crying out loud!! Last year I was consumed with getting Luke's diabetes under control. And that is pretty much how long it took, almost a year. Only a parent of a young child with diabetes knows how draining and tiring it is to literally have someone's life in your hands. The amount of time it takes out of your day to check blood, count carbs, and give insulin is a lot when you have 3 small children to take care of. There are many sleepless nights, there are often many days that diabetes consumes you because your child isn't having a "good day." Whether it be trying to keep them from going low because of activity or bring them down from having high blood sugar. I know last year I was not the best person I could be. I know I didn't give my oldest son the attention he deserved...or my husband for that matter. There were many things put on the back burner to take care of my newborn, and to manage Luke's diabetes. There was strain on relationships and friendships. I may have said mean things to people, or acted childish at times. The bottom line is, I was mad and overwhelmed. There was nothing left in me. Taking care of Luke and the baby literally drained me. It took everything in me to portray to others that everything was just fine. If something great was happening to another, I turned it negative. Probably because I was jealous. Probably because everything in my life had come to a halt with Luke's diagnosis. Probably because I felt alone. No matter how many people said "I understand," they didn't. There was absolutely no way any person could understand what it was like having a 6 year old in kindergarten, a newborn, and a 3 year old newly diagnosed with diabetes. Will and I have been in this together from day 1, and he is the biggest supporter of me out there.  He was working all day, going to school at night, and I was holding down the fort. But the truth is, for the most part, I was doing it alone . Diabetes is a horrible disease, not just for the people that have it, but for the families of those with diabetes as well. It is physically, mentally, and emotionally draining.
This year I have tried to have a brighter outlook. We are trying to make the best of everything. I am not taking anything for granted. Every moment with my family is cherished. I am so thankful for all the people in my life who have helped me deal with this disease and have been by my side all along. I still lack the energy to deal with certain things. If it doesn't involve my family and shows red flags for drama, I pass. I need to stay positive and surround myself with positive people. People who love me and my family and have our best interest in their hearts are the ones that matter.   
Life is a process, you can never go back and re-do. We can only move forward to improve. My mission as a mother and a wife is to put my family first. I will do everything I can to make them happy. I will continue to be an awesome wife, an incredible mother, and fight this disease!

Thinking about Luke starting Kindergarten

As summer gets closer to the end, my anxiety rises with the thought of Luke starting kindergarten. I have never been away from him for more than 2 hours and I have never trusted any one to care for him other than members of the family. This summer has been an emotional one. I have no idea what to expect. I have no idea how many phone calls I will get in a day, if any.  I have no idea who is aide will be. I have no idea who is teacher will be. I have no idea how long he will be on the bus. I have no idea how the other children will treat him. I have no idea what his schedule will be. Compared to a typical parent of a child without a disease, I have a lot to think about. I am a very controlling person to begin with. I like to be in charge. Sending my son off to school for over 6 hours with an autoimmune disease is very stressful for me. There are days when I cry about it, and there are days that I feel good about it.  My mom says, "well you could home school him." First of all, I would never! He is fine, and I know he will be fine. It is me. I am the one who needs to deal with this. School is going to be the best experience for him. He is so ready to go. He can't wait to ride the bus (if I put him on the bus, I'm still debating). He is so excited to be in the same school as Charlie. I am very grateful to have a good relationship with the school nurse, she will most likely become my new best friend! I put all my trust in her to keep my child safe while he is there. I will probably drive by the school 3 times a day...but I trust her. think of me on September 9th, I will be a wreck that day. I will try to be strong but inevitably, I will put my son on the bus, and I will be bawling my eyes out.

The Mother of All High Blood Sugar Tantrums....

Yesterday something happened that I had never experienced before. It started out as a normal day, we did our everyday hustle and bustle to get Luke to pre-school, Charlie to the bus stop, me filling the house with groceries, then making my way back to Luke's school to give him his insulin for snack and then heading home when he was done with school.
The difference about yesterday was that Charlie and Cole had well visits at the pediatrician and I needed to pick up Charlie from school early. Not a big deal. We headed to the pediatrician and I have to admit it was kind of nice to not be at the Doctor's office for Luke... for once. The boys checked out perfect and needed to have some blood work done. They took 5 huge vials of Charlie's blood (which I had not expected). The poor kid was a little upset as any 7 year old would be, but nonetheless he was brave. Now, every time we go to the pediatrician the boys are allowed to pick out a snack from the little café from across the hall. Luke knows this. Charlie knows this. It is usually a bag of chips. Well, because Charlie was so brave I told him he could pick out whatever he wanted, so naturally he picked candy, skittles to be exact. Of course, Lukas asked for a treat and I said "no."  I explained to him that Charlie was able to pick out a snack because of what he had to do in the doctors office and that Lukas doesn't get something every time Charlie does, especially if its for no reason.
Never in my life could I have been prepared for what was about to happen, should I have thought this decision about the snacks through a little better? Absolutely!
Lukas went ballistic! He started screaming at the top of his lungs "I want a snack!" I told him he could pick a snack, just not a treat. He continued. I told him again what was happening and that he had 3 seconds to pick a snack or we were leaving. He continued to cry and yell, so I paid for Charlie's snack, grabbed Luke's hand and tried to leave. At this point he dropped to the ground kicking, screaming and flailing all over the place. I could not believe my eyes! This was so completely out of character for Luke, I knew his sugar was high, it had been all day but I would've never expected him to act like this. I knew he would naturally be upset, but not this bad. He refused to get up, so I said "bye" and I started walking. He got up, chased me, began hitting me, and tried to flip the baby's stroller. Again, I was like a dear in headlights. I expected him to be upset about not getting a treat, but I was trying to teach him a lesson. You don't get everything your brother gets for no reason, you don't get a treat when your brother did something special as he doesn't get one when you do. You don't get presents on your brother's birthday and so on. And I most certainly was NOT giving in for any reason at all, high blood sugar or not.
As we proceeded through the halls disturbing every office and person in sight, I found a staircase where I sat Luke down and told him to calm down and when he was calm we could go. He would not calm down. Normally I would pull out his testing meter and check him but for some reason I was in shock and didn't get to it, it just didn't register in my head.  All I wanted to do was get the keck out of there! Then a really nice nurse came out to talk to Luke. I immediately said to her in a panic he wants candy but can't have it because he is a diabetic and his blood sugar is high" ...wait, then it dawned on me. I checked his Dexcom receiver. It read HIGH with a flat line across the top not even giving me a number, meaning his number was over 400.  But the good thing was, he was calm, at least for that moment. The nurse was so nice, she told Luke that she had diabetes too and her son also did as well and how there are certain times we can have a treat. All things Luke knows, but I could see in his face, it wasn't registering. I thanked her and she went back to work. And off we went to the exit the building with Luke screaming all the merry way. When we reached the lobby, I told Luke this was no joke and he needed to get himself together because we were going into the parking lot and he needed to be safe so he doesn't get hit by a car and end up in the hospital or dead. Yes, I told him he would die, I was desperate but not realizing how upset Charlie was getting. Charlie got very upset and said "mom forget it I don't want the skittles, just give him what he wants," and began to cry. I told Charlie, no way, and we went out the doors.
He held onto the stroller but was screaming the entire way, we got to the car and he would not get in hitting the car with his fists. I physically put him in and shut the door. He continued to scream and hit the windows. I roll all windows down and strap him in. He unstraps and gets out of the car. I strap him in again and check his BG. Its reading 434. Yikes! I correct him and wait for the insulin to start working. I call Will in a panic and tell him I can't go anywhere because I can't drive with him like this, he won't even stay in his seat. Will got on speaker phone and talked to him and he seemed to calm down a little bit. But not until after he threw his shoes at me and I told him the police would take him if he didn't stay in his seat strapped in. And guess what? It worked, at least I could get out of there. Poor Luke carried on crying for another 25 minutes and then just like that he was fine. He looked at me and said "mommy, I not crying anymore." Can you believe it? Jeez diabetes......