I mentioned in another post last night that I’m new here and I’ve already received a number of warm welcomes! I just saw this forum pop-up and I thought… well… it must be appropriate then for me to make a more formal introduction.
I’m a 32-year-old professional computer geek - married - with two wonderful boys. One of my boys (Tyler) was recently (last April) diagnosed with Type 1.
Here is the note I sent-out to my co-workers and friends about him at that time:
I just had a pretty amazing weekend involving my son Tyler.
Tyler is my 3.5-year-old energetic, adorable, and ostentatious second child. For about a week he had been having increasing trouble with frequent urination and accidents. He’d been potty trained for a few months now so it seemed unusual to us that he would start having accidents again but several people have told us over time that kids that age do “regress” every now and then so we just sort-of dealt with it as it came up. The problem began to increase in severity towards the end of last week though and we noticed he was drinking a lot more water as well. It reached a point Friday night where he was waking up in the night and crying as he ran to the bathroom because he had to go so badly… this also being a first for Tyler.
Interestingly though Tyler was acting just fine otherwise… playing normally, energetic, eating, etc… Doctors often told us when we were new parents that “sick kids act sick”… Tyler was not acting sick. Heather and I discussed the issue Saturday morning and we decided that I would call my friend the Emergency Room PA for some quick advice. We thought maybe he had a bladder infection or urinary infection. Steve (my friend) instead offered that we could come into the hospital where he was working on Saturday and he’d get us into a room for a quick free pee test without having to register or wait, etc… Who knew that doctors could do this for friends and family?
So early Saturday afternoon we brought Tyler in and after 30 minutes we coaxed and tricked him into peeing in a cup. He really thought this was odd since he was quite sure he’s supposed to only pee in a toilet. My friend Steve took the test away expecting to find what we suggested but came back a few minutes later in an entirely different mood. It seems Tyler was free from signs of infection but that there was so much glucose in his urine that it was off the scale. Steve being my friend and also brilliant in knowing me took the time to explain how the test strip turned “dark brown” – the darkest color on the spectrum for this test – almost immediately on contact with the sample… a test that usually takes a few minutes to develop. He then explained that this means it’s extremely likely Tyler is a Type 1 Diabetic and currently way too high on his blood sugar levels. He made sure I understood that I needed to immediately get him into his suggestions of either Children’s Hospital or Presbyterian / St. Luke’s (his two favorite choices always for pediatric care).
Upset and in slight denial I decided we would take him to the North Satellite of Children’s Hospital at Highway 7 and I-25 so he could get in quickly (as they are new and never busy) and get a blood test right away without paying as much or waiting for an emergency room admittance at Children’s in Aurora. In retrospect I think it may have been wiser just to take him directly to the main Children’s.
They got him in right away – I think he was one of only two patients in the entire ER of that facility on Saturday. Much to his objection they took his finger prick test immediately and he scored completely off the scale of that test equipment. They tested again a few more times. All the while Tyler was acting pretty normally for Tyler… hanging out, watching TV, talking to us…. Scared certainly but reasonably well.
What followed after that was a very difficult process of trying to get an IV into a 3-year-old and several more serious blood tests requiring more blood. They took his samples off to their lab immediately and they wouldn’t actually tell us what his score was except to say “way over 600”.
He was pretty-much checked on every 2-3 mins by what I think was every doctor and nurse in the facility while the three of us really just sat and watched cartoons and all the doctors decided what they were going to do. Ultimately they decided to send him in an ambulance to the main branch of Children’s Hospital.
At one point my wife went out of the room to make a call and overheard a doctor yelling at the ambulance company about Tyler along the lines of “You need to get here now, this child should not be alive.” This making her very uncomfortable she retreated to the room and didn’t tell me about it until much later.
By this time it had been explained to us that Tyler is definitely a Type 1 (Juvenile) Diabetic. The people there were very nice and took a lot of time to talk to us and explain what the plan was, etc…
So we took an ambulance ride down to Aurora to the very impressive new facility for Children’s Hospital where he was given further treatment and observation. With some insulin and careful care by about midnight they had his blood sugar down to around 150 and we were sent safely home for the night on the grounds that we would return Sunday morning at 10am for an emergency appointment at the Barbara Davis center.
Which I now understand is a globally known facility for the study and assistance of Juvenile Diabetes… very cool. They opened-up just for us Sunday morning with a single doctor and nurse and taught us how to administer tests, shots, and much more. His blood sugar test Sunday morning started again at 455… a little scary but he had just eaten a very large amount for breakfast. Before we left the Barbara Davis center it was under 250… and just before Dinner last night he was right at 150.
For a child of his age/size it’s considered completely safe for him to be between 80 and 200 and they actually want to keep him higher than lower as going too low is far more dangerous. Non-diabetic adults are better between 80 and 120.
On Tuesday we’ll return for a full day of testing, training, and education… then again in another week or two. Every morning we are to page the endocrinologist doctor who met us today (a very nice and very smart man) and talk to him about Tyler’s most recent tests and what doses we’re to give him when and of what types of insulin.
So I have a beautiful young boy… who should not have lived… but lived just fine… who happens to have Type 1 Diabetes. Of course he doesn’t like getting his sugar checked and of course he doesn’t like getting shots. I know Tyler and I know he’ll get used to it. He is a tough little boy. He’s mostly scared at this point I think because the IV process Saturday night was so traumatic… it really was. I think 3 is probably a great age to begin a new lifestyle and accept it as the “new normal”. Probably much better than 12 or 18.
How do you explain to a 3-year-old that he now has to have at least 4 blood tests a day and at least 4 shots a day from now… (forever?). He doesn’t understand - but I think he’s young enough that as it becomes a regular part of his life that he will learn to accept it as my wife and I certainly must. We have been telling him that his “blood is sick”. This seems to make some sense to him. He knows what blood is and he knows what sick is.
Heather (my wife) has done better with this than I have. I had to leave the room Saturday night after one of the attempts to get an IV in and call my friend our church’s main Pastor… I was really losing it. He prayed with me on the phone right then and promised to rouse a few others for us… my wife of course had made a few calls as well. We were very scared.
I don’t want to get too faith-ey on you but I truly believe that we have witnessed God’s Grace and Love. There’s no logical reason Tyler should have lived… and there is particularly no reason he should have been completely just fine. I enjoyed playing and wrestling with him last night before bed quite a bit more than ever before.
I am so undeserving… and so blessed.
Heather took these photos of Tyler’s Ambulance ride using her cell phone… my brave little boy with the puppy they gave him:
6849-n1435309572_322029_7381017.jpg (44.9 KB)
6850-n1435309572_322030_6812894.jpg (41.9 KB)