As many here know, I am an advocate for Diabetes Research, specifically, for the Juvenile Diabetes Research Foundation (www.jdrf.org). I have blogged about it here on many occasion as I am outraged by federal funding cuts, stem-cell research blocking by Congress and laws that allow health insurance companies to avoid covering individuals with diabetes ( here:
http://journals.democraticunderground.com/berni_mccoy/7 and here:
http://journals.democraticunderground.com/berni_mccoy/4 )
What many don't know is that about a year and a half ago, my son was diagnosed with type-1 diabetes, an auto-immune disorder where the body's immune system attacks the insulin producing cells in the pancreas. The disease seemed to come upon my healthy, athletic son so very, very quickly.
At the time, my entire family had gotten sick with the flu. My wife was away that weekend since she had final exams at her school. My two boys and I weathered the flu Friday and Saturday and it seemed like we were all getting better. On Sunday however, my oldest son started getting sick again. I did all the usual sick-care things and decided I would take him to the doctors first thing in the morning if he wasn't better. I was worried he was coming down with pneumonia as his cough had gotten worse and he was very sick to his stomach. I kept a close watch on him that night, checking his temp, listening to his breathing. My sleep was restless and I would wake up every half-hour to an hour checking on him. I dozed off after checking him around 2 am and he had been quiet for a while...
At 5 am I awoke to the sound of coughing. The sky was just beginning to turn light. Then my heart sank as I heard a rasping breath that sounded like someone struggling to breath. I rushed out of my room and almost stumbled trying to stop as I realized my son was not in his bed, but instead sitting on the staircase about half-way down, holding onto the railing as he coughed and wheezed. I rushed down the stairs and sat below him so I could get a face-on look at him. He was very weak and his skin was pale. For the first time I remember, I noticed how skinny and frail he seemed. I asked him if he could talk and stand up. He answered me "Sure Dad, I can... it's just this cough won't stop". While his voice and ability to stand were a relief, I suddenly realized that he had been coughing for some time but his cheeks and his face showed no sign of flush. I knew something was terribly wrong and knew I had to get him to the hospital immediately. And what I thought was pneumonia would be something so terribly worse.
I carried both my sons to our car and called my wife on the way to the hospital.
When we got there, they took a look at him and immediately admitted him after a very brief exam. I did note that the nurse who initially examined his breathing said, "well, that's not pneumonia..." The thoughts started racing through my head on what could be wrong and how we could miss whatever it was.
My wife showed up not long after and when my son saw her, he brightened up considerably. But my wife, who hadn't seen him in three days was terrified at how emaciated and fragile he looked and when she picked him up how light he felt.
The staff gave us our own room in the ER (I thought that was unusual), and they kept the lights very dim and told us not to turn them on. They were running tests and would be with us shortly. My son was tired and started to drift off to what I thought was sleep. They had hooked him up to several monitors. My wife and I were crying. The doctor came in and gave us the news that our son is in severe diabetic keto-acidosis. He was having trouble breathing because his lungs were expelling acetone from his blood that was the result of a chemical change the occurs during high blood sugar. The doctor told us that he has type-1 diabetes and he was in a high-risk of brain-swelling and coma, which they believed was already in progress. The fact that the room was dim was because his body was not functioning properly and the light could damage his eyes. They could not properly treat him here and were going to transfer him to Boston Children's Hospital.
My wife rode to Boston with him while I took our other son to stay with friends. We spent a week in the hospital where the ICU staff gradually brought our son's blood sugar from a level of over 800 down to a normal 100-150 range. My wife and I learned how our lives and our son's life would be dramatically and forever changed. We crammed a ton of knowledge into our heads on how to care for our son, check his blood sugar, give him insulin shots, count carbs and plan nutritious meals that would give our son the best chances against developing the many complications that are a result of diabetes. We learned that complications like blindness, kidney failure, neuropathy, circulatory problems and a shortened life-span are not a matter of if they will happen, but when.
What my son experienced during his diagnosis was not common, but it is not rare either. Sometimes, children with diabetes are lucky to catch their high blood sugar at their regular 6-month checkup. Sometimes, like my son, they are not. But regardless of the diagnosis experience, every family must deal with the long-term consequences. Since then, my son has been poked and prodded with needles, lancets and infusion sets over 6000 times. I changed jobs so I would not have to travel anymore. My wife and I stay up every night to do 2 and 3 am blood sugar checks. We have a special medical protocol that we provide for his school and we communicate with the school nurses on a daily basis. This is what 1 in 500 children must deal with. 1 in 500 children have type-1 diabetes. And this number is growing. Type 1 diabetes is the fastest growing chronic childhood disease.
But there is good news. Diabetes researchers and scientists are very close to a cure. For the first time, they believe we could see a cure well within our life time. And things like the insulin pump combined with a continuous glucose monitoring system can act as an artificial pancreas. This solution has been approved by the FDA for adults and is very close to final trials in children. For rare forms of type-1 diabetes, there has even been one girl who was actually cured. Her mother got to take off her insulin pump for good. A cure for every child with type-1 does not yet exist, but is only a matter of time and money.
This year, my family is walking in the JDRF Walk To Cure Diabetes. The link is in my sig line below. The JDRF was founded by parents of children with type-1 and is the largest single charitable contributor to research and has given over $1 billion to diabetes research. They are one of the most efficient charities where over 80% of the money raised goes directly to research. They are the largest advocates for stem-cell research in Congress and were a large part of the reason Congress past the stem-cell research bill that Bush vetoed. Millions of children's lives have been dramatically improved thanks to their funding of research. And diabetes will soon be a disease that is curable thanks to their continuing efforts. Please help continue to support this organization by going to the link and donating. You have all my thanks and gratitude.
Printer-friendly format
Email this thread to a friend
Bookmark this thread
(1000+ posts)
Send PM |
Profile |
Ignore
