Type 1 Diabetes sucks, really REALLY sucks.
The Good: it is a disease Hank can live with. Insulin has come so far and he can live a normal life. A cure is just around the corner.
The Bad: I have diabetes, Jeremy has diabetes, Kaitlyn has diabetes, and Hank of course. One person may be diagnosed but we all live with this disease. It is around the clock monitoring and care by all who love him.
The Ugly: It is a life threatening illness and at any moment things can go horribly wrong ending Hanks life.
Now you might think I am being dramatic here, but I am not. Most people are not aware of the severity of the disease, even nurses and doctors. It is my job as Hank’s mom to educate his caregivers on how dangerous this disease can be, sugar can be, and insulin can be. Insulin keeps Hank alive. Without it he will die. With too much of it he will die.
The ugly appeared a few weeks ago. Hank has been diagnosed with Type 1 Diabetes for almost four and a half years now. With the exception of the flu once he has been extremely healthy. Living as a Type 1 Diabetic you learn to be fearful of illnesses. Illness is most always accompanied with ketoacidosis (DKA).
The *American Diabetes Association states:
“Ketoacidosis (key-toe-ass-i-DOE-sis) is a serious condition that can lead to diabetic coma (passing out for a long time) or even death. When your cells don’t get the glucose they need for energy, your body begins to burn fat for energy, which produces ketones. Ketones are acids that build up in the blood and appear in the urine when your body doesn’t have enough insulin. They are a warning sign that your diabetes is out of control or that you are getting sick. High levels of ketones can poison the body. When levels get too high, you can develop diabetic ketoacidosis, or DKA.”
On January 2nd of this year Hank caught a stomach bug. Just a normal run of the mill 24 hour bug. So naturally he threw up. When Hank vomits I am instructed to call his doctor immediately with his blood sugar and keytone levels. At this time his sugars were 114 with large keytones. You reduce keytones by giving a patient insulin. But giving him insulin at 114 with cause his blood sugar to drop to a deadly number. The only option is to have him eat carbs so you can give him insulin for the carbs he eats which will also take care of his keytones. Easier said than done! He was vomiting and couldn’t keep anything down, so that idea goes right out the window. Our ONLY option was to head to the ER for an IV drip of sugar water to go with the insulin.
Here is Hank at the ER waiting for his Doctor to come in watching cartoons
Being that Hank goes through a traumatic experience every other day having his pump site changed with a large needle, he was deathly afraid of getting an IV. Luckily he had a great nurse handle the situation and get one in on the first try. Still watching cartoons, could not peel his eyes away from that TV!
I wish I could tell you that he got better and we went home. Instead we were in for a huge fight with the doctor’s and nurses in the ER to take care of him. See, they were treating him as if he was a Type 2 Diabetic a totally different approach than he needed. They tried to give him a deadly dose of insulin on three occasions. They had no idea what they were doing. This is common for us, to be honest. Whenever we are being cared for by a doctor or nurse that is not in the Endocrine field they don’t understand his disease. At one point his blood sugar was 56. That is seriously low and he needs fast acting sugar right away. They wanted to wait 30 minutes. They wanted to bring him up by giving him chicken (umm a protein?). They wanted to give him 2 units of insulin to get rid of his high keytones. Hank’s insulin senistivy is 1 unit to 200 points. That means 1 unit of insulin drops his blood sugar 200 points. So at 56, 2 units would make his blood sugar -164. Yeah he would be dead within 10 minutes. Jeremy and I have a system where Hank is never alone. One of us is ALWAYS with him. You have to be insane to think that this boy who we care for 24/7 and who we know how is body reacts to everything will ever be placed in someone else’s hands. We are always his advocate and if we disagree we refuse to let them do anything.
But look how happy is even though he is incredibly ill here. I love him so.
Since it had been 12 hours and the ER staff were unable to care for him right we were admitted to the hospital overnight. That meant going to another floor with more doctors and nurses who may not know what they were doing. The ER staff was glad to get rid of the crazy parents in room 5 and I was nervous what the night would hold for us. We got to his room at 12 am and I knew I wasn’t going to sleep that night.
And Hank was so sick
Then something wonderful happened! The nurse assigned to us had been an Endocrine nurse for ten years. She knew exactly how to care for Hank. She immediately gave him the sugar water and without waiting for the Doctor and his blood sugar finally came up to a safe number (she knew it would take an hour to get the order and that Hank couldn’t wait). Three hours later he was stable and on his way to being so better. I actually slept too! The gift of knowing I could trust her was the best thing that happened all day.
Hank and I taken on my cell phone. See how much better he looks!
Sleeping the next morning. All tuckered out but all his numbers were normal again.
He ate his breakfast and kept it down so he got to go play in the playroom.
Hank’s Endocrinologist came to visit us and I love him. We told him or horror stories of the ER and he told us there is already a plan in the works to have ALL of them trained. This is a brand new hospital and diabetes patients were not able to come for treatment up until a month ago due to the lack of training. This Children;s hospital is a sister hospital to the main on in Dallas and the Endocrine department is moving their headquarters there. It was beautiful and the best hospital experience we have ever had. I am totally willing to go back and we feel much better knowing that Type 1 Diabetes training is going to be a requirement there.
In all my knowledge about this disease I never though a little bug could cause Hank’s body to freak out the way it did. For now on we are placing sick family members in isolation so we don’t have to go through this again! I know a lot of you were praying for him and we are so incredibly thankful for all your support!
If there is one lesson we have learned in our seven and a half years of being in and out of hospitals, a dozen surgeries and everything else in between is that you HAVE to be your own advocate. Doctors and nurses are there to help and heal you, but that doesn’t mean they know EVERYTHING. It is okay to question. It is okay to make them prove to you what they want to do is the best option. I am sure there are two dozen nurses and doctors combined out there that think I am crazy and controlling. But my kids are alive and I don’t care. It is our job to be educated in order to make health decisions and sign these forms. Don’t lose faith in your physicians, just find the ones that listen, explain and empower you to be in control of your health.
* American Diabetes Association http://www.diabetes.org/living-with-diabetes/complications/ketoacidosis-dka.html