As most of you know on July 15th Jackson was diagnosed with new onset type 1 diabetes. I know many of you however don't know the whole story behind how we reached that conclusion. I have just had the time to sit down and post about it all. For some, you will be reading what you already know, so you can ignore it. :) For those of you wondering though...here it all is.
Around the middle of May, Jackson started having potty accidents. At this time, he had been potty trained for a year and a half during the day and almost a year at nighttime. If you have heard me discuss potty training, then you know that I have often bragged about how easy Jackson was to train (even if he was 3 years and 2 months when I started!) So, you can imagine how frustrating this was to all of a sudden have all these accidents. We disciplined him, tried to limit fluids, go back over telling us in advance, etc. There was no rhyme or reason to the accidents as they seemed to happen equally at home and out in public. So far though no accidents at school, but he did only go 2 days a week 3 hours a day. The nighttime accidents were the most puzzling. He had had a handfull of nighttime accidents since he was trained a year ago, but not like this. He was wetting the bed, well actually saturating the bed, two to three times a night! I disciplined him for it mostly because I thought it was laziness, and well I was exhausted myself! It was like having a newborn again!
I discussed what was going on with his current teacher. Thankfully she and I have a great relationship. I was concerned some emotional stress was happening somewhere. Nope. No big changes at school. So, then I took him to our regular pediatrician. I was sure he had a urinary tract infection although I thought that was pretty rare for a 4 year old. I thought maybe something was up anatomically with his bladder or something. I had heard about things like that that children outgrew so I wasn't that worried.
Dr. Sniff (aka Dr. Smith) simply said the urinalysis was normal, and that is was simply potty training regression. He said that was very normal and typical especially in boys and to go back to a sticker or reward system like one would do when starting training. So, doubtful, I did. Then, after several stickers and one reward I just felt this was all too silly. I just stopped the stickers. (Plus, Preston wanted a sticker, too, and then it felt like it wasn't working if everyone got a sticker.) I felt like he was too old for all that. I do remember I did start the stickers again later, but for some reason cannot remember now when or why or how.
Then, June came along. I remember commenting to Paul on several occasions, "I need to check his blood sugar." Once even I told Gail, our beach buddy, the same comment. She laughed it off that 2 days before leaving for the beach wasn't the right time to check it because I wouldn't be going to the beach. I'd be spending 4 days at the hospital instead! (Her son was diagnosed with type 1 at age 9.) And, if you're wondering why I said I should check it, I knew frequent urination was a symptom from school. Plus, Gail had even reminded me. And, we had checked Jackson's sugar last year (we bought a home glucometer just for that reason) to keep an eye on him because Paul's dad has type 1 (also diagnosed at age 4), so we were aware there was a chance the boys could get it one day. Somewhere around that point, I started putting him back in pullups at night. I remember part of the time doing underwear under the pullup or just a pullup. It was then I realized the daytime pullups might not be enough. He was saturating through those and still wetting the sheets. So, finally I had to go back to the nighttime pullups. Wow. Sometimes even those leaked through.
So, vacation was mid-June. Early July, I got out the test strips and realized they were expired. So, I thought I'd get more at work that Saturday. I got to work that Saturday, and they only had a 50 count box in stock. Those things are expensive! And, your insurance doesn't cover them unless you have a prescription. And, you don't get a prescription unless you have diabetes. :) You'll get a kick out of this sentence: I thought I'm not getting a big box! I'll NEVER use all of those before they expire! (haha! I now use an average of 10 strips per day!) So, another week passes of accidents and drama. I go to Wal-mart to buy more sheets and mattress protectors, but being still in denial I guess, didn't think to look for test strips!
Finally, one day I wasn't even working, I just felt compelled to drive to work and get some strips. I called to see if they had the 25 count box. They didn't. But, Jemekia had 1 vial of 25 that we had broken up for a patient, so I ran up there to get those. (Crap! I JUST realized I don't think I EVER paid for those! I'll be handling that tomorrow!) Anyway...we left the pharmacy and had some errands to run including going to Toys R Us to finish getting Nicholas's birthday present and Ella's birthday gift. Needless to say Jackson's behavior in Toys R Us was horrible! Really bad. Not like that's the first time that's ever happened. But, it was just bad all the way.
So, we finally made it home. I was angry. I told Paul, "I'm checking his sugar! I should wait till he's fasting! But, I don't care! Something's wrong with him! When your dad's sugar is high, he's mean, and I think he's high!" (Seriously, though you all know I didn't really believe that.) I sadly admit, I almost enjoyed hearing him cry from the finger prick because I was REALLY that angry with him. Honestly, looking back though I was just exhausted. I think deep down I knew something had to give. Which is why I can say a small part of me was relieved to get the diagnosis. It was like I know now. Now, I can act.
Anyway...I wait for the result. Not knowing that waiting would soon become a very large part of my life...
And....on the screen...it says in numbers that are forever imprinted in my memory..416. I don't think I will ever get the picture of that screen out of my head till the day I die. (Trust me I know some of you are reading this thinking this lady is crazy! This isn't THAT big of a deal. TRUST me..I really even sitting in the hospital and receiving the diagnosis thought it would be easier than it is. It is the hardest thing I've ever done. I feel so guilty I didn't reach out more to parents of children who had it sooner. You have no idea until you are in these shoes. And, I am sure it is equally hard even for adults who fight the disease.)
I yelled to Paul (who was in the shower getting ready to leave for his night auction) what the result is and hugged Jackson so hard I am sure he thought I was certifiably nuts. I am sure you can imagine all the guilt I have put myself through lately. All the discipline and how hard we came down on him for the potty accidents. And, getting aggravated (here's another symptom I forgot to mention) when he would say at lunch frantically, "Is this lunch or dinner? Are we still going to have dinner? When's dinner?" After hearing the 416 Paul said, "What does that mean?" I was like uh, it's 4 hours after a meal. It should be AT LEAST below 200 but really more like 120. So...still in denial, I call my pediatrician to make sure they were open till 8pm. The uneducated receptionist answered my question, and then I hung up. STILL in denial (and wasting time that my child couldn't have gotten sicker!) I then pricked my finger and Paul's to make sure the machine worked. I then even tested with the control solution (which by the way was expired but still showed in range the machine and strips were good.)
Then, I called the pediatrician back to make sure the provider I liked was going to be in tonight. She quickly asked if I was the lady that just called with the 416 blood sugar. When I said yes, she said they told me to tell you to go to the hospital! At this time, I break down and start crying. Paul is trying to console me. He kept saying it's fine! We'll deal with it! Still...in....denial....I called the urgent care Children's at Mount Zion to find out about going there. The 24 oncall nurse with Children's called me finally and said..."WHY are you still at home? You should be at the hospital!" I was like okay, I guess we'll head to Atlanta. Should we go to the one by Northside or Emory? She (once again probably thinking I'm certifiably nuts) said, "Maam, you have to go to your nearest emergency room. You cannot pass one. You need to leave now."
So, I called our fellow diabetic none other than Paw Paw Mitchell and asked him and Maw Maw to meet me at Henry to help watch Preston. Thankfully, they ran out the door to assist. I told Paul we'd be fine and to go on to work (I think I was still denying it was true but I also remember thinking how crappy our insurance is and how we needed to keep his jobs to pay for this!) But, I did have the forethought to say should I pack a bag? And, Paul (also in big time denial) said don't worry about that! I guess I kind of knew deep down I'd be in the hospital the next few days, but I really think he had NO idea. I did give Jackson some water to drink on the way to the hospital. I don't remember why..if it was just because he normally would have gotten a cup of juice at this time of day..or was he thirsty as he had often been during those days..or if I really knew it would help lower the blood sugar. When we got to Henry, he had to pee in the middle of the ER parking lot he drank so much of the water. Thankfully, though the water did help and his sugar was down to 190 by the time we made it to the triage department. I will say Henry treated us well, and we were rushed back pretty quick. Waiting in the room itself was long, but his tests took time. I wasn't a big fan of the lady trying to start his IV or draw blood, but then again with your kid I wonder if you'd be fond of anyone doing that. They finally got his sugar down to 150 with fluids. By that time, the ER doc had already said, "I'm sorry to say it does look like new onset diabetes." (My stomach turned to solid rock when he said that. I was thinking of short-term issues like birthday parties and him feeling different from other kids. I found out later Paul was a nervous wreck already thinking about retinopathy, nephropathy, impotence, heart disease and long-term complications.) But, when it came down to 150, he said he couldn't be for sure. So, he called the endocrinologist on call at Children's because if he was admitted he'd have to be transferred there anyway. When he walked out to call her, I remember still thinking: "There's a chance. He might still not have it. Maybe he's borderline diabetic." (What was I thinking? After all I AM educated in the medical field.) By this time, Gail had shown up and so had my dad. There was a room full of us, when he came back to say, "He has to be admitted. She said this is new onset type 1. He needs to go in an ambulance unless you want him to have to get a new IV up there. We need you to feed him so they can get a good sugar reading after food intake when he arrives."
Jackson is crying by now and whining. Because he had been saying for 2 hours, "I WANT TO GO HOME!" Plus, he knew we were supposed to go to Six Flags the following day and was worried about that. And, he kind of acted scared when an ambulance was mentioned. But, FINALLY, thankfully, he suddenly thought after much urging from me how much fun that would be!
By this time, Paul had finally arrived and Preston (who sat patiently in my car in the ER parking lot with Maw Maw for like 2 hours with no dinner waiting to see if we would be admitted) had gone home to spend the night with Maw Maw Mitchell. (A big thanks to Uncle Steven and Aunt Malia who went to our house and packed a bag for Preston to take to Connie's and THEN get this even packed a bag for me and Jackson and drove all the way up to Scottish Rite to deliver to us at I guess what must have been like midnight by that time!) We fed Jackson some Chick-fil-A and waited for the paramedics. I remember thinking I should have been starving and ordinarily would have been, but I couldn't eat. The paramedics load him onto a stretcher with straps and all, and I realize he looks "sick." Pale, tired, I don't know if it was because it was like 3 hours past his bedtime and he'd been so upset with the IV and blood draw. Or if his body was really ill. I think, "How could I have missed this? How come I didn't realize he looked pale?" Really, he's always been pale thanks to my genes. :) And, now logically I know I really didn't "miss" it and know I am thankful he wasn't in diabetic ketoacidosis by the time I realized what was going on (which is very dangerous and many children get to this point before diagnosis and he could have just been days away from that.) I remember my heart hurting. I'd never been in an ambulance before in my life! I tried to act calm, and he was excited as they turned on the lights and siren for just a minute just for him. I will end part one with my memories of the ambulance ride. How Paul followed us in his truck the whole way up there. How I saw him make tons of phone calls about what I am sure was him breaking "the news" to all of our concerned family and friends out the back window of the ambulance door. And, how Jackson fought sleep the whole way there. (And, some crazy paramedic tried to convince me everything in life could be cured with naturopathy including cancer. And, how I should not give Jackson insulin after he's discharged..rather I should give him chromium picolinate which would make his sugar go up if it's low and go down if it's high.) I remember feeling nauseated and my stomach hurting. And, I remember looking at my baby, and wishing it was me. I wish it was me. I still wish it was me.
Stay tuned for when my heart can handle part two.
Thanks for caring enough to follow our story.
This week Preston took me to breakfast with my girlfriends at Gritz Restaurant on the square...
And, he and I had such a good time. The food was delicious (although don't ask about the clean score...) and at the end they even brought Preston and his other young friends a lollipop! And, for his pancake they made it into the shape of Mickey Mouse. Well, you know Preston will go back there anytime after that!
Then, being a total gentleman he went shopping with me at some of the shops around the square. I never have the time it seems to shop up there but always want to. I figured we've already paid the parking meter, why not now? Plus, it is very hard to take one yet alone two kids in those stores with breakables. I thought one kid would ensure possibly less broken merchandise I didn't plan to purchase. He did such a great job treating me like a queen! He paid for our breakfast and my shopping purchases! Both boys love to give the sales people or waiters at restaurants the money or debit card. And, since Preston was solo while Jackson was at school, I tried hard to make sure he got to take turns doing lots of fun stuff typically he and his brother would fight over.
