You've seen sick people before. They aren't their normal self. Most of us, when we get the flu, want to curl under the blankets and sleep all day. We don't want to be social; we aren't in the mood to be active; and even our appetite goes away. I know, for most everyone, it is a difficult, miserable time and we look forward to it passing so we can be back to our normal self and carry on with life's daily activities.
When it comes to being sick, have you ever seen anyone in Diabetic Ketoacidosis, or DKA? The person is experiencing such high blood sugars that their muscles cramp up in extremely painful ways, they are constantly thirsty but may throw up everything they try to put down, and their energy is so drained that they slump to a heap because all they want to do is sleep. The fight that the human body goes through to stay alive is absolutely draining, so much so, that death truly is the next best thing. Now picture this happening to a 10 month old that can only cry because there is no other way to vocalize how they are feeling. Imagine putting the child on the floor as you scramble to get your other children ready to go as they don't really understand what the rush is, especially since that 10 month old doesn't look like anything is wrong, he's just crying....all babies do that. When you look back at the 10 month old, he's slumped on the floor, looking like he is going to take a nap right then and there. This is the point where panic sets in. What's going on?! Where should I go? What do I pack in the diaper bag? As everyone is loaded in the car, you ask your 5 year old to keep the 10 month old awake so that he doesn't slip into a coma. The 5 year old obliges...nonstop calling for the attention of the 10 month old....for 20 minutes.
In DKA all your body wants to do is sleep. It needs to rest to recharge, unfortunately, without medical help, your rest could be your last.
I got the call around 11:30 on Sunday morning. I was 8 hours away from my family and I did whatever I could to calm my wife down. I needed to be there at that moment. Unfortunately my only job was to get to a spot where I got better cell service, and sit in a car praying harder than I ever had before. When I got the call, I wanted to scream.
"His blood sugar is over 500. They started him on an insulin drip, he's a Type 1 diabetic."
The tears wanted to come, the uncontrollable bawling, I just couldn't do it. Not in a car with a buddy of mine. I had the firsthand knowledge that this child is going to experience things that no one should go through. What did he ever do to get this? His only problem should be cutting teeth, learning how to stand unassisted, eating solid foods...not finding out what an extreme low or high does to the body. Nobody should know that. The phone rang again. Frantically I picked it up.
"Turns out his blood sugar was 863, they are strapping him to a gurney and taking him to Madison so that a Pediatric Endocrinologist can help him."
When I moved to Rochester, and we started going to church at Resurrection and Life, the Pastors did a sermon series on prayer. I have not been the poster child for praying. I did it whenever I needed something or when something absolutely ecstatic happened to me, but I can certainly say I mostly said the common table prayer and our goodnight prayer with the boys. I rarely talked with God by myself. The sermon series I heard jump-started my prayer life back in July and I can proudly say that my conversations with God are getting easier. On that 5 1/2 hour drive I mostly prayed, but I felt like I needed some major encouragement. The outpouring of Christians, both close to me and complete strangers, lifted me up. On Sunday, God heard a loud cry for my 10 month old, my boys, my wife, and me. My burden was light, my heart heavy for my family, but I knew it was in God's hands. Prayer kept my mind focused on him and not about negative things like regrets about situations that could not have been calculated.
When I finally had good service, I received a picture of my child. His body looked lifeless, his eyes closed, wires taped all over....I wanted him in my arms....no, he needed to be in my arms. I needed to have the car go at unimaginable speeds so that I could be there. I needed him to know that I have been where he is. I know what it's like to cling to life by a sliver and still make it. He needed my words of encouragement, but I couldn't be there to give them. "Just pray, just pray."
Around 6 pm I was finally able to see him. In those 6 hours his blood sugars slowly dropped to the mid 300's. I bent down to greet him in as cheery a voice as I could muster and I won't ever forget the look he gave me. The life was gone from his face. He looked right through me, and his lips never changed to a smile, they just stayed in a statue-like frown. He looked like a ghost. As if someone put a fake baby in my wife's arms. He fell asleep and I ran out to get my wife and I some food. My wife was understandably exhausted, so we switched out and she went back to be with boys and to try to get a decent night of sleep.
The nurses informed me that they would be checking his sugars every two hours and that he couldn't eat until his numbers were normal. My 10 month old hadn't eaten in 12 hours; by the time he did eat, it had been 24 hours of no food or water. Anytime anything passed in front of his face he would muster up the strength to open his mouth in desperation for food or water, especially water. As a father, it broke my heart. I slipped him water off of a small lollipop sponge. He sucked the sponge dry on more than one occasion and would cry when I wouldn't give him more.
The nurses came in like they said they would. I was up with them every time because they wanted me to rub his back or comfort him as they pricked his toes, drew out more blood, or had to move him with all the wires. More than once he fell back asleep with his hand wrapped around one or two of my fingers. My sleepless night wasn't even close to the sacrifice I wanted to give him, but what could I do? Take back the disease I genetically gave him? I remember the first time the nurses left me holding his hand. I finally let go what I wanted to do the moment I was told he was a diabetic. I wept, but this wasn't an angry cry, or one out of exhaustion. This was a sobbing that came with the knowledge of what his life was going to be like. I cried knowing there will be times when he wants to be treated like he doesn't have the disease, but also wanting people to make sure he lives a diabetic lifestyle because long-term effects have massive impacts to the body.
I remember the second night like it was seeing my son for the first time. It was late at night and he rolled over onto his stomach, something that he didn't do because he had always been too drained. As he rolled, he made his long drawn, sleepy, hum. This sound was long overdue because all I had heard were cries coming from him until that moment. This meant he was getting better. By morning, he was sitting up on his own, yet another massive feat! Next thing you know, he is smiling and playing peek-a-boo. My son was back, but at the same time, he wasn't. My new son had blood sugars of 300 one hour and then blood sugars of 60 the next. He now knew the pains that I go through on an almost daily basis.
When his blood sugars are checked, I am jealous of the people that say, "Oh, he's at a 250, that's not bad." Clearly, these people don't know what that feels like, and I am truly happy for them that they don't. I hope I'm not sounding ungrateful for the fact that everyone is trying their hardest to help this 10 month old control a disease that no one has control over. We are constantly tweaking his correction scale and his pancreas is still trying to produce insulin. (This is known as the honeymoon stage all Type 1's go through. There is no set time on how long it lasts, it's different for everyone.) So, we correct his 250 and then the next hour, his pancreas decides to help, which means he could be getting double (or more) insulin, now he is experiencing a 40 blood sugar. So we quickly correct him and he shoots up to a 180, then 250, correct, 113, 87, bottle, 244, correct, 67. With every correction we give, we know we are doing the right thing for him, but at the same time, my wife and I feel like we are sending him down the tubes because we don't know when his pancreas is trying to work as well.
Since returning to work, I keep getting asked about how my son is doing. I can confidently say that that is a very difficult question to answer. I usually say, "Good, just taking it day by day." But in reality, he's had some very bad days, but it's easier than having to explain numbers and diabetes on a tank that is pointed below the E. Other times I want to say, "He's just being him, it's my wife and I that are really trying to keep everything together for him and most times we fail to do that. We are trying our absolute best, and the 2 AM or 4 AM blood sugar checks are harder when you are working long days and for the past 2 weeks you have been going non stop on minimal (at best) sleep." (Luckily, we've had some help in the form of my wife's mother. She's really come through by spending her days with him so that we can figure things out with daycare and doctors. Thanks Kathy and Dennis.)
This isn't easy. This isn't fair...to any of us. But, this is our life. I'm sure things will smooth out eventually, but we are in for some long days/nights and tough roads. I just keep saying, "Take care of you to take care of him. Keep all plans on a day by day schedule, and know that you are doing your best to take care of your family."
Emotionally, I'm tapped out, and I wish I could keep my optimism all the time, but there are times when I allow myself to shut down and let the feelings take over. I wish I could do more for my family (I know I'm doing enough, but I'm a dad with a sick child that has no cure.) and I wish I could do more to thank all of our supporters, whether through your prayers, time, or monetary gifts, we truly are appreciative. We have been cleared by the doctor to get a CGM, now we are waiting to see if insurance will cover it. Prayers are continually being sent concerning that front. Please don't stop praying for us, we could use all sorts of prayers. I appreciate all the kind words, concern, and help that is continually given.
I'm all out of words now, my mind is flat lining and so I must stop for now. This tired guy needs to sleep. Love you all.
When it comes to being sick, have you ever seen anyone in Diabetic Ketoacidosis, or DKA? The person is experiencing such high blood sugars that their muscles cramp up in extremely painful ways, they are constantly thirsty but may throw up everything they try to put down, and their energy is so drained that they slump to a heap because all they want to do is sleep. The fight that the human body goes through to stay alive is absolutely draining, so much so, that death truly is the next best thing. Now picture this happening to a 10 month old that can only cry because there is no other way to vocalize how they are feeling. Imagine putting the child on the floor as you scramble to get your other children ready to go as they don't really understand what the rush is, especially since that 10 month old doesn't look like anything is wrong, he's just crying....all babies do that. When you look back at the 10 month old, he's slumped on the floor, looking like he is going to take a nap right then and there. This is the point where panic sets in. What's going on?! Where should I go? What do I pack in the diaper bag? As everyone is loaded in the car, you ask your 5 year old to keep the 10 month old awake so that he doesn't slip into a coma. The 5 year old obliges...nonstop calling for the attention of the 10 month old....for 20 minutes.
In DKA all your body wants to do is sleep. It needs to rest to recharge, unfortunately, without medical help, your rest could be your last.
I got the call around 11:30 on Sunday morning. I was 8 hours away from my family and I did whatever I could to calm my wife down. I needed to be there at that moment. Unfortunately my only job was to get to a spot where I got better cell service, and sit in a car praying harder than I ever had before. When I got the call, I wanted to scream.
"His blood sugar is over 500. They started him on an insulin drip, he's a Type 1 diabetic."
The tears wanted to come, the uncontrollable bawling, I just couldn't do it. Not in a car with a buddy of mine. I had the firsthand knowledge that this child is going to experience things that no one should go through. What did he ever do to get this? His only problem should be cutting teeth, learning how to stand unassisted, eating solid foods...not finding out what an extreme low or high does to the body. Nobody should know that. The phone rang again. Frantically I picked it up.
"Turns out his blood sugar was 863, they are strapping him to a gurney and taking him to Madison so that a Pediatric Endocrinologist can help him."
When I moved to Rochester, and we started going to church at Resurrection and Life, the Pastors did a sermon series on prayer. I have not been the poster child for praying. I did it whenever I needed something or when something absolutely ecstatic happened to me, but I can certainly say I mostly said the common table prayer and our goodnight prayer with the boys. I rarely talked with God by myself. The sermon series I heard jump-started my prayer life back in July and I can proudly say that my conversations with God are getting easier. On that 5 1/2 hour drive I mostly prayed, but I felt like I needed some major encouragement. The outpouring of Christians, both close to me and complete strangers, lifted me up. On Sunday, God heard a loud cry for my 10 month old, my boys, my wife, and me. My burden was light, my heart heavy for my family, but I knew it was in God's hands. Prayer kept my mind focused on him and not about negative things like regrets about situations that could not have been calculated.
When I finally had good service, I received a picture of my child. His body looked lifeless, his eyes closed, wires taped all over....I wanted him in my arms....no, he needed to be in my arms. I needed to have the car go at unimaginable speeds so that I could be there. I needed him to know that I have been where he is. I know what it's like to cling to life by a sliver and still make it. He needed my words of encouragement, but I couldn't be there to give them. "Just pray, just pray."
Around 6 pm I was finally able to see him. In those 6 hours his blood sugars slowly dropped to the mid 300's. I bent down to greet him in as cheery a voice as I could muster and I won't ever forget the look he gave me. The life was gone from his face. He looked right through me, and his lips never changed to a smile, they just stayed in a statue-like frown. He looked like a ghost. As if someone put a fake baby in my wife's arms. He fell asleep and I ran out to get my wife and I some food. My wife was understandably exhausted, so we switched out and she went back to be with boys and to try to get a decent night of sleep.
The nurses informed me that they would be checking his sugars every two hours and that he couldn't eat until his numbers were normal. My 10 month old hadn't eaten in 12 hours; by the time he did eat, it had been 24 hours of no food or water. Anytime anything passed in front of his face he would muster up the strength to open his mouth in desperation for food or water, especially water. As a father, it broke my heart. I slipped him water off of a small lollipop sponge. He sucked the sponge dry on more than one occasion and would cry when I wouldn't give him more.
The nurses came in like they said they would. I was up with them every time because they wanted me to rub his back or comfort him as they pricked his toes, drew out more blood, or had to move him with all the wires. More than once he fell back asleep with his hand wrapped around one or two of my fingers. My sleepless night wasn't even close to the sacrifice I wanted to give him, but what could I do? Take back the disease I genetically gave him? I remember the first time the nurses left me holding his hand. I finally let go what I wanted to do the moment I was told he was a diabetic. I wept, but this wasn't an angry cry, or one out of exhaustion. This was a sobbing that came with the knowledge of what his life was going to be like. I cried knowing there will be times when he wants to be treated like he doesn't have the disease, but also wanting people to make sure he lives a diabetic lifestyle because long-term effects have massive impacts to the body.
I remember the second night like it was seeing my son for the first time. It was late at night and he rolled over onto his stomach, something that he didn't do because he had always been too drained. As he rolled, he made his long drawn, sleepy, hum. This sound was long overdue because all I had heard were cries coming from him until that moment. This meant he was getting better. By morning, he was sitting up on his own, yet another massive feat! Next thing you know, he is smiling and playing peek-a-boo. My son was back, but at the same time, he wasn't. My new son had blood sugars of 300 one hour and then blood sugars of 60 the next. He now knew the pains that I go through on an almost daily basis.
When his blood sugars are checked, I am jealous of the people that say, "Oh, he's at a 250, that's not bad." Clearly, these people don't know what that feels like, and I am truly happy for them that they don't. I hope I'm not sounding ungrateful for the fact that everyone is trying their hardest to help this 10 month old control a disease that no one has control over. We are constantly tweaking his correction scale and his pancreas is still trying to produce insulin. (This is known as the honeymoon stage all Type 1's go through. There is no set time on how long it lasts, it's different for everyone.) So, we correct his 250 and then the next hour, his pancreas decides to help, which means he could be getting double (or more) insulin, now he is experiencing a 40 blood sugar. So we quickly correct him and he shoots up to a 180, then 250, correct, 113, 87, bottle, 244, correct, 67. With every correction we give, we know we are doing the right thing for him, but at the same time, my wife and I feel like we are sending him down the tubes because we don't know when his pancreas is trying to work as well.
Since returning to work, I keep getting asked about how my son is doing. I can confidently say that that is a very difficult question to answer. I usually say, "Good, just taking it day by day." But in reality, he's had some very bad days, but it's easier than having to explain numbers and diabetes on a tank that is pointed below the E. Other times I want to say, "He's just being him, it's my wife and I that are really trying to keep everything together for him and most times we fail to do that. We are trying our absolute best, and the 2 AM or 4 AM blood sugar checks are harder when you are working long days and for the past 2 weeks you have been going non stop on minimal (at best) sleep." (Luckily, we've had some help in the form of my wife's mother. She's really come through by spending her days with him so that we can figure things out with daycare and doctors. Thanks Kathy and Dennis.)
This isn't easy. This isn't fair...to any of us. But, this is our life. I'm sure things will smooth out eventually, but we are in for some long days/nights and tough roads. I just keep saying, "Take care of you to take care of him. Keep all plans on a day by day schedule, and know that you are doing your best to take care of your family."
Emotionally, I'm tapped out, and I wish I could keep my optimism all the time, but there are times when I allow myself to shut down and let the feelings take over. I wish I could do more for my family (I know I'm doing enough, but I'm a dad with a sick child that has no cure.) and I wish I could do more to thank all of our supporters, whether through your prayers, time, or monetary gifts, we truly are appreciative. We have been cleared by the doctor to get a CGM, now we are waiting to see if insurance will cover it. Prayers are continually being sent concerning that front. Please don't stop praying for us, we could use all sorts of prayers. I appreciate all the kind words, concern, and help that is continually given.
I'm all out of words now, my mind is flat lining and so I must stop for now. This tired guy needs to sleep. Love you all.
I can do all things through Christ who strengthens me! Love and prayers,Linda
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