So, you’re probably wondering:
What the hell happened?
You and me both, friend. But I will tell you what I do know.
Gabriel had been acting… “off” for a while. His teacher and I both clocked it--we had many discussions about how he wasn’t sick enough to send home, but it felt like he was maybe fighting off something.
Back at Christmas, we were visiting with Glo and Pawpaw for the holidays, and Gabe just kept peeing out everywhere. No matter what we did--stick him on the potty every hour, change him frequently, stick him in the shower (no judgment, y’all--showers are bleachable, furniture is way harder to clean), he was still urinating on every flippin surface in Glo’s house. It was stressful. It didn’t really clock as something to be worried about though. For one thing, if you have 130 pounds of growing boy, that is a lot for one diaper to contain. We figured maybe he had outgrown his old diapers, which wasn’t great because he is kind of in this in-betweeny stage where there isn’t a great size for him. Plus, he was stealing sodas like a mad man; every time I turned around he was absconding with another one. Caffeine can irritate the urethra, so maybe that played into it somehow. Regardless, we spent a lot of that week scrubbing up messes.
We get back home and he gets into the swing of things at school. But he still feels “off”; there is something that isn’t shining quite right about him. I call the incontinence supply company and order a different size of diapers, we hide the sodas and make plain water bottles more available (which are disappearing at an irksome rate; those things aren’t free), and we keep moving forward waiting for some other sign to hit.
Gabriel does not speak; that does not mean he does not try to communicate. And he did his level best to communicate that he was not okay to us.
When he is not feeling well, he makes almost an aggressive form of contact with me. He uses his hand to lift my chin and look into his eyes, which are always pleading with me to figure it out. I tell him, “show me, buddy. Tell me on your talker. I want to help you; I just don’t know what you need.”
So he listened: he took his talker to school and told every single adult there, seven times over the course of a morning “sick. Worried. All done. Please”. He was single-minded and determined, even if we could see nothing physically wrong with him. I chose to honor his communication and take him out of school and to the doctor. Michael didn’t feel it was really necessary, but he respected my decision.
We took him to the pediatrician to see if maybe he had an ear infection; he had mentioned that his “face, ear” hurt, which would kind of follow with the lack of clues we had, so we focused in on there. Gabriel lit up when Dr. Nathan walked into the room; whether that was because his buddy was there or because he was like “this guy will help me!” is unclear. We found no obvious sign of Gabriel being sick, so we took him home. That must have been a frustrating day for Gabe; he worked so hard to communicate and came so close to us figuring it out, but we just missed it. What he was experiencing was hard for any child to express; he felt crappy and he wanted Mom to figure it out and fix it.
Wednesdays are the days I do schoolwork with my sister. It is a good time to make sure that every week we are making academic progress, checking in with one another and keeping each other accountable in our goals. Also, it is absolutely a fantastic time of good food. This week was Spicy India gutti vankaya and paneer tikka masala. Irrelevant to the story, but it was super tasty and I wanted to remember the detail.
Anyways, Amber and I are working on this Natural Science Lab experiment and I get a call from Stacia, Gabe’s teacher. She sounds…okay, so Stacia always sounds pretty chill. I told her she reminds me of a capybara because she is just the epitome of rollin’ with the punches, staying level-headed. Even so, she sounds a little worried. Gabriel has been tested by the nurse, his temperature is fine, his chest sounds are clear, but he is fighting to stay awake. She said he would keep his eyes open for maybe one minute during occupational therapy to interact, but then they would close again. He didn’t even want to swing in the sensory room. Because of his imperfect sleep schedule, it is not uncommon for him to set aside a day a month to just catch up on sleep. He’d been sleeping a lot lately though. Maybe a growth spurt?
Except that he was not eating.
For you that know Gabriel, not eating is nigh on apocalyptic. That boy can put it away, and does so at every available opportunity whether it is his food or not. So the fact that he was refusing both breakfast and lunch meant I wanted to take him home.
Michael goes and picks him up and I head home from Amber’s; Gabriel ends up eating quite a bit of mac and cheese at the house so Michael thinks Gabe just didn’t want to be at school and is probably fine. He is acting more or less like himself. Even so, I think we should check his blood sugar. Michael thinks it couldn’t hurt, but that it was going to be a mild waste of time and a test strip--if it will make me feel better, then it is worth it. Michael washes his hands and I set us up; Gabe immediately sticks his finger out and doesn’t fight the poke at all. What a good boy. Probably used to it because he sees his sister do it all the time.
527.
You could hear a pin drop in that room. Everyone freezes and stares at the little digital display.
I say unconvincingly, “maybe we got a bad read. You go rewash his hands, I’ll change the lancet and we will get a clean read”. This was a tiny bit grasping at straws because we just did these things. But in such cases, it is good to be sure.
The second reading is 497. We are in this.
Since he started dating my sister and eventually marrying her, Nathan has insisted when I have medical questions to go ahead and call him instead of going through the nurse line at the office. I have not really taken him up on this often because I don’t want to feel like I am taking advantage. So I usually go through the more indirect route of texting Amber, who either gives me the answer I need because she is pretty smart and capable in her own right, or she texts him and relays the information. This system works. As today is time sensitive, I go ahead and call Nathan and tell him the situation. I ask if it would be better to make an appointment with the pediatrician’s office or go directly to the ER. He recommends I make an appointment, there is a slot open at the south office in twenty minutes. That way, if he does need to be admitted, we circumvent the entire ER waiting experience and can get directly referred to the pediatric floor by the pediatrician. I thank him and get Gabe ready to go.
On the way, I text Stacia to give her an update. She told me after that when she read the text aloud in her class, all of her aides went silent, too. Everyone was stunned by this.
Dr. Palmere is working the south office. We like her; she is fantastic. Shelly already has a room ready for us so we go right back; I am given a urine specimen cup to try and capture a sample, but Gabriel pees out twice while we are there. The doctor’s notes read “patient voided everywhere but the cup” which made me laugh a great deal, and I love that it will be a permanent part of his medical record.
They bring their glucometer in and we test him again; this time the reading only reflects “HI”. Different machines have different max number read outs; this one was probably around 500 if I had to guess. But it meant that it stayed within my expectations; he had high blood sugar. They call our endocrinologist, Dr. Hsieh, who is also in absolute shock. She kept saying “no! How is the mom?” She is also excellent.
She says we have to drive to Fort Worth and check into Cooks Children's Hospital to figure out insulin dosing because he is diabetic.
When Michael and I joked about worst case scenarios, this was it. We would say “at least Gabe doesn’t have diabetes; could you imagine?” Now we were in the car, Gabe munching happily on pork rinds (carb free!) and sugar free Gatorade as we take him to the hospital. It felt surreal, absurd.
They were ready for us when we got there; Dr. Hsieh had alerted the ER that we were on our way, so we got taken right back into a room. Michael and I had big concerns about them trying to put an IV in; Gabe is strong and not shy about his opinions, which include not leaving stuff touching his skin. Heck, the pants and shirt are most days a negotiation. This was going to be a thing.
At Cooks, they have a “Child Life Specialist” team that specifically works to keep the children calm with as little medical intervention as possible. She came in and talked to us about Gabriel, then came back with a lead vest to use as a weighted blanket and an iPad. I have to admit, that was a pretty clever use of existing hospital equipment; that lead vest is heavy. We put it over Gabe’s legs and she stayed at his left hand with the iPad while Michael sat behind him and two nurses worked on his right arm. Once again, we were shocked. Gabe hit his head a few times to express annoyance at being restrained, then he found that hideously awful sound on YouTube (unassisted, I might add) from “My Friends Tigger and Pooh: Hundred Acre Haunt” where Piglet says “oh duh-duh-dEEEEAR” and played it ad nauseum. It has been a minute since we have heard that sound, as we have blocked it on every available device and from every conceivable account within a four mile radius from him, but goshdarn did he see his opportunity here.
Everything after was pretty much routine. Gabriel was not in diabetic ketoacidosis; we caught it in time. But lab work revealed that he does indeed have Type 1 diabetes. Like his sisters, he will be insulin dependent for the rest of his life, by current medical advancement. After less than 24 hours in the hospital, having talked to the entire team of educators and specialists and social workers to make sure Gabe would have the support system he needed going forward, we were sent back on home to manage. Which we can--he has a remarkably high pain tolerance, so the shots are startling more than anything. If you tell him what you are doing, he is as docile as a lamb during administration. Finger pokes, he trots right over and sticks a digit out like he’s done it for years.
Amber actually sent me an interesting study on glycemic control and prevalence of Type 1 diabetes as a comorbidity with autism spectrum disorders; it implied that we may actually see a bit better control with Gabriel with less insulin. Indeed, in the hospital after the first shot his number floated down to 132 and he has stayed in pretty tight control ever since. I think his highest number so far has been 304 and his lowest 112. With Tula on the roller coaster where yesterday alone she had a high of 500 and a low of 40, that tells you something.
We did basal rate testing the first few nights after getting home, where we had to test him every three hours overnight to make sure he wasn’t crashing, but because he has been so mild, they said we could discontinue that. Last night was the first full night’s rest I have had since this thing started.
So this is our life now. Our next steps are getting Benjamin an antibodies test; this will tell us if he has any of the four antibodies that increase his likelihood of developing type 1 diabetes. It won’t allow us to prevent it, but it will mean that we have a heads up and start routine screening. I don’t know that he will ever not have to worry about it, though. He’s kind of our last man standing.
Michael and I will also do the screening, so we can figure out if this was inherited from one of us. Not sure what it will reveal, but at this point, our contributions to this research study might help them find answers as to the origin of this strange and prevalent disease, and quite possibly a cure.
Until then, much love from my sugar babies. We appreciate all your prayers and messages and texts and support, during this time and always.
--Andie
