Wednesday, November 6, 2013

A day in the life...

A day in the life. The life of someone who has to work all day long to keep themselves alive. Not in a dramatic way, but in the small ways that make the biggest difference way down the line.

What you and I and most of the free world take for granted my children cannot. They can't stop by the fridge, pop it open, grab a small snack and then move on. If my kids want a snack they have to stop, test their blood, count carbs and bolus insulin. It can be a time consuming process and its not fun for a seven yr old boy who just wants to head outside with his friends. To be honest its just a sheer pain. My kids have to poke their fingers up to six times a day, sometimes even more, take several shots or live with a pump that's attached to them like a small IV, and always be aware of how their feeling. Always.

Today I will tell you how my nights go. Not every night, but I would say more than half my nights since the day Megan was diagnosed more than 15 years ago. I think I can safely say I have redefined "exhausted". At bedtime I test every ones blood. Two nights ago Colby's blood was ok, so was Megan's, but Skyler was 120. Now, that's a beautiful blood sugar. However, if you have a diabetic you need to understand one very important concept. A diabetics blood sugar is never level. Now what I mean by that is that it's never just "stationary". It's always going up, like after they eat, or it's going down, after their insulin starts to work. So if Skyler's blood sugar is 120 a bedtime you have to know that if there's insulin on board during the night he surely will start to drop low. That night he did. By four in the morning I heard the ever so familiar sound of weird crying. This type of crying sounds like the child is having the worst nightmare ever. Everyone of my kids have cried in the same way when they go too low at night. It also means that he isn't capable of walking or even talking, just crying. So, after jolting up, and trying to calm my pounding heart I grab the blood machine and some glucagon (emergency sugar shot) and head in there. I test him and sure enough he's low. So, after trying to get him to eat, which proves futile because he doesn't even recognize I'm even there, I give him a mini glucagon shot and then I wait. I sit with him a while, test him again, confirm he's coming up and then I go to watch TV. I watch for 30 minutes and test him again. This goes on for about an hour or two until I feel confident he's ok till morning. By then I drop in bed and pass out. This routine has gone on more many more nights than I would care to admit. Sometimes its not as bad, sometimes the kids can sit up and eat and are ok after just a few minutes, and sometimes they are in full blown seizure mode where we have to keep them from hurting themselves and us while we try to desperately bring up their sugars. Once or twice we have had to call the aid of an ambulance, but luckily not as often as you would think.

So there is a night readers digest style. Its long, hard and exhausting, but it is what it is. I will get up every night if it means my kids keep their health. I will do whatever I have to and more at the end of the day. I will addict myself to Dr Pepper just to keep my eyes open during the day. It is what it is. Some days are harder than others, but I hope that by showing them how much I care about them that they will then care about themselves that much and take care of themselves. I want them to all outlive me, and in today's day and age I think it's possible. But it starts with the small things. Like getting up in the middle of a night with a cry.

Saturday, March 30, 2013

Colby's diagnosis

When Colby was diagnosed it was a much less grand affair. Not ambulances, no questions, no surprises. It was just a quiet sad time.

Just last October we, Jon and I, started to notice that Colby was drinking more water. We didn't panic right away though because he had always been our big water drinker. He loved drinking water, which was weird for us with all these kids that would walk all the way to the gas station just to get some soda. But as the month wore on he seemed to need more. Then the night time peeing started. He either was up at least once a night or he even occasionally would wet the bed. We still didn't panic though. Non of it was over alarming until the very beginning of November. For the space of about 4 nights I noticed that he was up a lot going to the bathroom. It unnerved me, but I tried to push it out of my head because surely if I didn't know what was going on, then it wasn't happening, right?

One night after several nights of this Jon and I were on the couch watching TV when Colby got up to pee. Then about 15 minutes later he did it again. We talked about his symptoms and whether we were being paranoid. We decided to just sit and watch TV and wait for a bit. In the space of an hour he got up no less than 6 times to go to the bathroom. The next debate was who was going to check him. I believe it came down to rock paper scissors. Not to make light of a difficult situation, but we had to find something to lift us up, even if just a bit. I lost and had to go check him. His blood sugar was over 500. Well, with my heart pounding and what tiny bit of hope I had left I checked myself to see if the machine was wacko. I was an nice 120. So I checked him again, cleaning his finger hoping again that maybe he had some left over sugar on his fingers. Nope, it was still over 500 again. I went out to Jon and filled him in. We both just sat on the couch, eyes fixed on the TV not knowing what to say or how to comfort each other.

At that point the debate became whether or not to take him in right then to Primary's, or to wait until the morning. We both decided that it would be best to try to explain to him what was going on after he had a full night's rest, or the best he could get anyway. I will admit that's when the tears started. They weren't tears of fear, or anxiety like in the past with the other kids, they were tears of resignation. Tears of "Oh my gosh, can I do this again?".

By morning we got the kids up and started with the day. Once everyone was up and going we took Colby into our bedroom and explained to him about his blood sugar. He knew what diabetes was, his very best friend and closest sibling had it. He had watched Skyler get shots and blood checks his entire life. He broke down into tears and cried....
"I don't want diabetes, I don't want it...."
" I know honey, but it's not something I can make go away. We are going up to the hospital and we will have to stay for a few days, OK?"
" I don't want to go, I don't want this, why why why?"
By this point in our conversation I was crying as hard as he was. Trying to tell my child that he had this disease was much harder than just dealing with it with our babies. They just trusted and followed our lead. Colby knew and was scared and traumatized.

After telling the other kids, with most of us in tears we had our family prayer, the kids went to school and Jon, Colby and I headed to the hospital. The next few days were more review, more diabetes supplies and more hope that I could fit another diabetic into my day. More worry, more carb counting and more time with a disease that I at one time in my life never even knew anything about.

Colby is a trooper despite his first few days. He tests his blood on his own, he is trying to learn to count carbs and some days he is a shining example to his older sister who is currently trying to forget she has a disease....I love this boy, he is my hero. All my kids are, for different reasons...

Saturday, February 16, 2013

My little Sky Boo, diagnosed

Skyler's diagnosis was particularly traumatizing. In order to tell the story so you can feel our true pain we need to go all the way back to when I was pregnant with him. At our twenty week ultrasound we found out his kidneys were dilated. This had happened before, with Jessi and we weren't really all that alarmed at the time. Her problems resolved themselves after she was born and that was the end of it. So, with Skyler we weren't worried. We probably should have been. During the next 18 weeks we had several more ultrasounds and each one showed more and more dilation. At one time my OB wanted to send us to perinatoligist that specialized in these sorts of problems. We didn't go see any new specialist until after Skyler was born, however.

He was born on Halloween night, at 9:47 pm. He was a round cute little boy who didn't get his name until we saw his face. That was a first for us, and the name we picked was one we had considered long before that night, but had dismissed. So, Skyler Daniel was here. At that point we started right up the doctors. Our pediatrician knew he was in over his head and we were sent to Primary Childrens Hosptial. Over the next three months Skyler went through three rounds of Nuke Med tests to test his kidney function. Steadily, but fast, his left kidney continued to worsen. So, on April first he went into surgery to fix it. The doctor told us it was good we did it when we did because his kidney was almost completely obstructed. The catch 22 with kidneys is once they lose function it never returns. So when you know there's a problem you have to act fast to save the kidney. At the time we had no idea how important his kidney function would be later on in life, and thank goodness we did what we did when we did because then June came.

Late in June I went to Las Vegas with Skyler, just the two of us. He had another cold, like he had had since the day he was born, but it was a fun trip anyway. Lori and I both commented though on the fact that Skyler seemed "off". He was unhappy almost the entire weekend. Once we got home things got worse. He was sick for another ten or so days. It was July by then. The day before Lacie's birthday in fact, July 9th. It was a Friday morning. Jon went to scout camp with Isaac that day. It was crazy getting them ready to go. Sleeping bags, backpacks and scout shirts. It was crazy. Skyler cried almost the entire time. Once they were out the door I focused on him. He was only 8 months old at the time.

I took him into my bedroom and laid him on my bed. I thought maybe I needed to change him, and he was very wet. I found that peculiar since I had changed him an hour before. The entire diaper change he cried, a lot. I tried to give him a bottle, he wouldn't take it, I tried to give him a binky, he wouldn't take it. I tried everything. Then I noticed it. He was crying, but no tears were coming. Then I looked in his mouth, and it was bone dry. My heart sank, as it began to beat a million miles an hour. I calmly walked into the kitchen and got Megan's blood machine. I think the walk back to the bedroom took an hour, although it was only seconds. I was shaking as I took his blood sugar. It read HI. When your blood machine reads HI it means the persons blood sugar is over 600 and can't be read by a machine. Since a normal persons blood sugars are between 90 and 120 most of the time, I knew. I knew.

I wrapped him up, after checking him two more times of course, and then checking myself to double check the machine and carried him with me to the phone. He was still crying. By this time he was in serious DKA, the last word in diabetes 'no no's" before comas and death. Diabetic Ketoacidosis. Long fancy word for a little person starving to death. Acid in the blood, acid coming from the body breaking down its own muscle tissue for food. He needed insulin and fast.  Jon was at scout camp, I would have to send someone after him later. I needed to get Skyler to the hospital and fast. I called Polly. The minute she picked up the phone I lost it. I cried and tried to explain why I needed her help. She was calm and reassuring and wanted to know if I needed anything other than help with kids. No, I was going to be ok, I just needed to know the other kids were taken care of for a while. She came right over and gathered everyone up and took them back home with her while I put Skyler in the car and took him straight to Primary Childrens Hosptial.

When checking him into the ER they said "What does he need to be seen for?" I told them "Initial onset diabetes, and he's in DKA by the way."
The doctors were very impressed that I knew the problem, diagnosed him and was calm enough to get him to the ER. Why wouldn't I be? I had walked the walk and talked the talk. We had been walking this road already for 10 years. I knew what I knew.

They got his IV going, got him settled into a room, starting all his meds he was going to need to help his body get back on track and then we waited. Polly's husband Scott went to scout camp and told Jon where I was and why. He was there in a flash. When he walked into the hospital room and saw us there we just nodded our heads at each other. Again, we knew....

Since that day I have cried for Skyler, with Skyler and because of Skyler. He is a happy 4 and half yr old now and he is such a strong little boy, but a very quiet one. He takes the diabetes without one complaint, ever! When he was diagnosed we realized how important it was that his kidney issues were taken care of. He would need every bit of kidney function he could get. His life wasn't going to be easy as it was.  He is on a pump now and his little face shines when he sees the others getting their shots and happily exclaims that he doesn't have to do that anymore, unless we are changing his pump site and then there's a few tears. He will get used to it though because that's what he does. He quietly faces all that life throws at him with strength and courage. He doesn't complain about any of it and just takes what comes. He is a shining example to me of courage and I think as my other children get older they will see it too. They will take their cues from him and keep going no matter what. I am so in love with that little boy, he is my beacon at times....

Sunday, February 3, 2013

My fiirst baby, diagnosed....

Megan. Megan is now almost 16 yrs old. She was born on May 21, 1997. She was a big baby and although she had a bit of a rocky start she seemed to be just fine. Just fine isn't a word I would use to describe her first year after that though. She had one illness after another, and not just small illnesses, big ones. She had a yeast infection that went from her mouth to her bum and back again that entire first year. She also had ear infections, coughs, colds, fevers and you name it. When she was five months old she had croup that landed her in the hospital, one month later she had it again and I spent 10 days on the couch with a humidifier within a foot. Ten entire days.... By April 1998 I was exhausted. It might have been the hard first year with her, it might have been the fact that I was pregnant with Isaac, or both, but I was tired. She had an ear infection that got so bad her eardrums burst. With blood running out of her ear I honestly didn't know what I had gotten into with that child. It was about to get a lot worse. 

May 17th was a Saturday. Jon got up and went to basketball and I started my day with McKenna and Megan. But Megan wasn't well. She was sluggish, tired and wouldn't do much other than sit around. I showered with her, and went about my chores. She seemed off, and as the morning went on it got worse. I couldn't put my finger on what was wrong. She didn't have a fever or runny nose, she wasn't throwing up or had any other symptoms. The only thing I could pinpoint was that she was breathing fast. I thought maybe she had croup again. I put a call into the doctor, and after describing what was going on the nurse told me to go straight to the ER. I did as I was told, but was wondering why? Seemed kind of drastic...but I did as I was told. My brother came over to watch Kenna and my sister in law was in charge of finding Jon. I went to Alta View. As I sat there getting checked in my reasons for being there sounded kind of dumb.

"What seems to be wrong again Ma'am?"
"Well, she is just off somehow. I can't explain it, but something is wrong. Oh, and she is breathing fast."

I looked down at her and thought "boy, they are gonna call me paranoid and send us home in ten minutes. Now I feel stupid..."

As the doctor looked her over he confirmed that she was breathing fast. Three times normal in fact. He looked at me and very somberly told me that there were only two things that would make a person breath like that. One, she had ingested some sort of poison. Two, she had type 1 diabetes. My mind was reeling, I kept thinking over and over again "What had she eaten that day? Shampoo while in the shower? Cleaning solution?" Even then my mind couldn't grasp what was really going on. The doctor told me there was a quick easy way to figure it out. Megan had her first blood sugar taken right then. They didn't tell me right away though. I paced the hall for a few minutes until he came back.

"Your daughter has type 1 diabetes. We will start an IV, get some fluids going since she is so dehydrated and get her transferred to Primary Children's".

I wasn't sure what to think at that point. I had NO idea how much our lives were going to change. I didn't know any diabetics, no one in either of our families was a diabetic. I was clueless. Jon came to meet me at that point and I filled him in. He was as dumbfounded as I was.

It took them what seemed forever to get an IV going on Megan since all of her veins kept collapsing. She was so sick by that time and I hadn't even known it. How do you know if a baby is peeing more than normal? More thirsty than usual if they can't tell you? She had been drinking a lot of bottles and had been waking up drenched for several days, but she couldn't tell me and I didn't have a clue what to watch for. It was all new to me.

They got her IV in, got her packed onto the stretcher and we went straight up to the hospital with Jon following closely. They got her settled into a room quickly and our world spun completely out of control, but we learned. We learned how to carb count, how much a balanced diet can affect the health of your child, how to give shots, draw up insulin, where to give them and how to poke fingers. What numbers were ok, what weren't and how to deal with it all. Emergency shots, complex carbs vs simple carbs, what foods were "free", what do to if your child begins to seize. You name it, we learned it. After Megan was stabilized they came into our room handed Jon the insulin and a syringe and said "it's your turn to try it". Jon looked at them and told them he wasn't sure he could give his child a shot. Their response? "You can do this or you can watch your child die". That did it. He took them and gave her the shot immediately.

After four long days in the hospital we were released and given medications, supplies, phone numbers and instructions and told "good luck". We were going to need it.

I am not sure any one of us spoke on the way home. We had spent four days in the hospital learning how things would change for us forever....

We have come a long ways in the last 15 years. May 17th will forever be etched in my mind. It's the day I became a doctor, a lobbyist for children's rights, a nurse, a caretaker, a dietitian and the day a new kind of mother was born.

Wednesday, January 30, 2013

Come along, it might get bumpy though!

I have decided it's time to start writing about a part of our family that I don't often mention. It's time to start mentioning it....type one diabetes. It's a nasty disease, that affects lots of people, young and old and there is no cure. NO CURE...

There is as it stands now, no way to stop this disease, only to treat it. It takes it's toll on my children's bodies and slowly but surely it will eventually take their lives. We have been blessed to be born in a time when the fields of science and medicine can and do save lives everyday. My kids included. Insulin is their "life support" of sorts and without it they would die. Now, as that may all sound horrible, and it is, I will say that my kids are blessed. With lots of carb counting, momma hanging over their heads while they eat, shots and due diligence my kids can live long, mostly normal lives like the rest of the world.

I will start later with the diagnosis of our first child and then relate the experiences of our other two kids diagnosis. Each post will tell a little about our fight for our kids health, the wonderful people we have met along the way and the challenges that this disease poses for moms, dads and kids alike!

Thanks for joining us, ask questions and count your blessings each day. We do....