On May 24th (3 weeks and 2 days ago), I took Eli to the doctor. Over the previous few weeks, I had noticed his increasing thirst, and then I kept thinking he was getting skinny...not growth spurt skinny, just skinny. And he eats non-stop. The day before I had called our pediatrician and inquired about if I should be concerned...I was pretty much told that it is a phase, don't stress it. After I pushed a little, they agreed for us to come in the next day for a checkup.
I will back up here and add...Matt has an autoimmune disease (Graves Disease), and I have always had in the back of my head the warning that one of LJ's NICU doctors gave me. He said that autoimmune diseases are often hereditary, but that they don't always present in the same way. Type 1 is also autoimmune.
On the way to the appointment, I got behind an accident and was worried about being late. No joke, I almost called the office right then to cancel...I mean, we had a full day ahead of us after the appointment, and in the back of my head I kept asking myself if this was a waste of time. Needless to say, I made it to the appointment, three little turkeys in tow, and they got us right back. They checked his weight...down 4 lbs since his last check 6 weeks prior (for a 28 lb kid, that is significant). They didn't waste any time in checking Eli's blood sugar...I mean, this was supposed to be a quick in and out "peace of mind" visit. Instead the nurse did the first prick, and the meter just said "hi". Me, I figured it was an error. She tested again. "Hi". And one more time just to make sure. "Hi". I finally said, "So what does that mean?" I have no experience with glucose meters, so to me, it meant absolutely nothing. The nurse responded by saying, "Well, the doctor will be right in," as she scuttled out the door. A few minutes later doc came in, tested again with the same result, and that's when he looked at me very seriously, and said, "I don't mean to concern you, but..." At that point everything became a fog. He started telling me about how the "Hi" means that his blood sugar is beyond what the meter measures. It measures up to 600 and anything over 180 is too high. He was telling me to get to the Children's Hospital, that he was calling to expidite us, and not to go home, but to make some phone calls on the way to arrange for someone to pick up the other kids and for Matt to meet me there. The last thing I remember him saying with pitty and sadness in his eyes is, "I hope I am wrong..."
We got to CHOA, where my mom met me to take LJ and Kaycie, and we were whisked back to a room immediately and blood was being drawn, IV's were being started, and I was still in a fog. At this point I knew. I knew. Dammit, I knew. They kept asking if he had been sick recently. That's when I remembered he had a virus the first week of May (I only remember because I missed my last day of Bible Study because he had spiked a 105 fever that left as quickly as it came). They kept reporting blood test numbers, and all I remember sayin is "Does this mean my son has diabetes?!" They informed me that may have been the trigger that set off this whole disaster. And here I was just thinking I was being a cautious overbearing mother. Even as we sat in the ER, Eli was becoming more agitated, it was like a fast downhill slide. By the time Matt walked in from work, he was being admitted. We were being told that we were lucky we took him in so soon, before he got deathly ill. We were being told our lives will be changed but we can "manage" it. We were handed an entire backpack of information, and on top of that all of a sudden learning how to do finger pricks, draw needles, give injections, check ketones, administer emergency glucogon, count carbs, learning carb ratios, correction formulas, what numbers to call when things get to high or low, what number to call to report our numbers each day, what foods help, what foods can cause issues, you can feed him like normal, but if you feed him like normal it won't always work in your favor, pumps, continuous glucose monitors...oh, and it will be like having a newborn all over again, among other things.
At the end of night one, my head was spinning. Eli was miserable at this point, and we had no idea how to care for this kid that we have raised for 2.5 years. I still feel raw.
Of, course we are home now, and figuring out things more each day, but he and I are exhausted. I keep thinking...they said it was like a newborn, sure. We wake every 2 hours and battle the highs with insulin and the lows with 2 a.m. juice and candy parties, which subsequently give him a sugar rush. Which, half the time end up in a high number that we have to adjust yet again. Where newborn days had an eventual end, it is sinking in that we will be doing this for the rest of his life, or mine. The. Rest. Of. Our. Lives. We will be fighting this stupid disease.
In my head, I had to keep reminding myself that God is faithful, but I have battled anger, I won't lie. I have questioned...God! We have been given 67 Nicu days between the 2 boys, hearing loss battles and all of the repercussions of that, and now this?! One thing gets better and a new hurdle comes in to play. I try to put on a tough exterior and play the game, but I am tired now! I keep having to remind myself that we are tough...we are in this together, and I know so many families have bigger battles to fight than we do. I will keep praying, I will keep asking God for help, and we will keep on truckin'.
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| In the ER right after diagnosis |
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| Later the first night after he got some fluids in him. |
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| They finally let him eat! He has been chowing down for 3 weeks! |
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