We've had a pretty crazy week and the reason my posts are so far behind. Let me fill you in...
· Other than jaundice at birth and a summer cold, Samuel hasn't been sick at all. However, he started not feeling well on Wednesday morning (10/26). His lips were blue and he seemed a little "off". At lunch he threw up and was definitely not himself. I took him to his doctor that afternoon and we all thought it was a stomach flu. He threw up once more Wednesday night and by Thursday morning his breathing was very labored. We called his doctor back and he told us to take him to the ER. At this point, he thought the heavy breathing was possibly from being dehydrated. We could also tell that Samuel was becoming weaker and having a hard time staying awake as the morning went on.
By the time we arrived at the ER in St. Louis at 10:30am, he was like a rag doll. His eyes were sunken in and was very pale. He never lost consciousness, but was pretty close. The combination of his lifeless body, labored breathing, flu-like symptoms, yet minus a fever, almost immediately made the ER doctor think it was a blood sugar issue. After preliminary blood work was done, the ER doctor came in to tell me that he was waiting for one final test, but that he thought Samuel was diabetic. After my shock and some preliminary discussion, we decided to wait for the final test before going into more detail. Thirty minutes later diabetes was confirmed. Normal blood glucose levels for a non-diabetic is 70-110… Samuel’s was 981. When glucose levels are extremely high, as Samuel's was, the body can't use sugar (glucose) as a fuel source because there is no insulin or not enough. Fat is used for fuel instead. As fats are broken down, acids called ketones build up in the blood and urine. In high levels, ketones are poisonous and can cause coma and death. This condition is known as ketoacidosis.
Within minutes I was informed that Cardinal Glennon Children's Medical Center had been called and a transport team was on their way to transfer Samuel. They said he would likely be there for 3-5 days and that his first 24 hours there would be crucial. When ketones and glucose levels are this high, it has to be dropped very slowly to avoid brain swelling. When the transport team arrived, it reminded me of US Marshals coming in and taking over from local authorities. The team consisted of 6 people all having specific tasks. The ER team backed off only to provide assistance and the transport team took over and started prepping Samuel for his move. They got an insulin drip going, swapped out tubes and hoses and transferred him to a transport bed. Within 10 minutes they were walking out the door telling me where to meet them at Cardinal Glennon's.
Here is a picture of Samuel in the ER...
We spent 27 hours in the Pediatric Intensive Care Unit (PICU). They checked his blood glucose levels every hour to ensure they were dropping, but not too fast to avoid brain swelling. Poor Samuel got so tired of being pricked and having blood drawn that when someone just entered the room and started to go near him, he started crying. By Friday morning, he was past the critical stage. Friday afternoon they took him off the insulin drip and switched him to shots. He was also allowed to eat so they could see how his blood glucose levels were reacting to eating and shots. Although he was still dropping and spiking, he was stable enough to be moved to a regular room Friday evening.
While he was being stabilized, Cardinal Glennon requires parents to go through 3 days of training to learn how to care for a child with diabetes. We met with several Endocrinologist (diabetes doctors), diabetic nurses and dietitians. We received all the necessary equipment and were taught how to use it. Our training taught us that all carbs aren’t equal and affect the body differently in a diabetic’s world (ex: milk is a carb, but cheese isn’t. Peas are, but carrots aren’t).
Over the weekend, we continued to receive training, started calculating his carbs at each meal and giving him his shots. As soon as he stopped getting pricked each hour and after Mama and Dada started doing it, he didn't mind them. (Now he actually laughs when we prick his finger.) All weekend his doses continued to be adjusted to keep his levels more steady. On Monday morning, it was decided that he was stable enough and we were well trained enough to go home.
Samuel gets finger pricks 4-6 times per day so we can check his glucose levels and will get 1-4 insulin shots per day depending on what he eats. His diet doesn't really change though. We have to account for everything he eats and have a very systematic eating schedule. We calculate the number of carbs he eats and determine his insulin dose based on that number. His glucose levels are still dropping and spiking some, so we are still tweaking insulin doses. We have to call Cardinal Glennon every day to report his glucose levels and chat with a diabetic nurse to fine tune things. Other than his daily eating/insulin routine, we have to get some special precautions setup. He wears a diabetic wrist band now, we have to get an emergency bag setup to go in his diaper bag and keep fast acting sugars handy in case his glucose level drops. Once these types of things are setup, hopefully we won’t need them often.
After coming home, his schedule was off from being in the hospital and was a little more clingy than he used to. You could tell he was still a little weak too - he was having a hard time walking without his little legs giving out. As of this morning, he is much stronger and played well on his own without getting fussy.
Dan and I still have a lot of adjusting to do... keeping track of his doses, glucose levels, measure and weighing his food, calculating carbs, doctor appointments, etc. But, if this had to happen, I'd much rather it happen to him at 13 months versus 13 years old. As he grows up, this will just be part of his life... his norm. I think this will be much easier on him in the long run.
I'll be sure to keep you updated with any changes!
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