Last night was a long one. Since we didn't begin the IV fluids until 10pm, we couldn't start weaning the formula until then either. So, starting at 10pm, we began weaning his formula by 14ml and checking his BG and ketones every 30 minutes. I don't know how our poor nurse (Annie) got anything else done all night, honestly. The feed wean went from 10pm to midnight, and his BG went from 113 to 86, ketones holding steady at 0.2. All good. In the next half hour, he dropped to a BG of 74 (while still on IV dextrose) and his ketones climbed a bit, reaching 0.5 (still fine). I vaguely remember a BG of 70 at 1:30am, while we were weaning down the dextrose, and then I drifted off to sleep sometime shortly thereafter. Kind of. I was in and out every time Annie, bless her heart, continued to check his BG and ketones all night long. She later told me that his ketones were slowly climbing during that time.
Annie's party ended uneventfully at shift change (7am) and Aidan was holding steady around 70. Our morning nurse got him at critical on her very first check - 46. When she rechecked him, he was 51, and when she sent off bloodwork for confirmation, it came back at 51. Just a hair over "critical." So the fast continued. His checks at 8:30 were in the low 50's. Then, at 9am, a new wrinkle. BG 51, but ketones were suddenly at 3.3. WHAT? Where did that come from? The 9:30 check showed BG 41, ketones 3.8 - so the fast officially ended, both for low BG and high ketones. Things happened pretty quickly after that - the lab confirmed his BG at 41, and the first round of bloodwork went in. He got a shot of Glucagon (a hormone that's supposed to bring up his BG quickly) at 9:45, which immediately made him nauseous, and didn't even help. He fell down to 33 by 10:00, and they decided to halt the test and put him back on IV dextrose. 15 minutes later, on IV dextrose, he was up to 50, which is still too low, but heading in the right direction. He spent the rest of the morning slowly working his way back up to 70 on IV dextrose.
Dr. Langdon decided to go ahead with some growth hormone labs, so those were drawn an hour after the Glucagon and every 30 minutes after that until lunchtime, when the final labs were drawn and feeds were restarted. The results that could come back immediately came back around 4pm - it doesn't look like he has a growth hormone deficiency - or at least not one severe enough to be the cause of his hypoglycemia. So, this means a couple of things.
1. This tells us that Aidan's form of hypoglycemia is called ketotic hypoglycemia. This basically just means that his body doesn't tolerate fasting, and while his blood sugar falls, he produces ketones, which are no bueno.
2. We still don't have any answers about his poor growth. I guess we'll have to take that up with his Endocrinologist when we follow up with her in a few weeks for the rest of the bloodwork results.
The plan is to remain on 24/7 feeds, since fasting proves dangerous to him, but it's thought that with a careful wean, Aidan could probably tolerate up to 4 hours off feeds safely. He absolutely cannot just halt feeds (you know, exactly the thing we were doing). We've been instructed that if he's sick and not tolerating feeds for more than 2 hours, we are to take him to an Emergency Room for IV dextrose. We have a letter explaining his condition as "severe" and giving treatment protocols for him. It uses intentionally terrifying phrases like "seizures" and "brain damage" when explaining the consequences of untreated hypoglycemia. Honestly, it's kind of sobering and gives a new air of fragility to an already nerve-wracking kid.
The way he acted with critically low BG and high ketones makes me concerned that his sugars are low and ketones are high from time to time at home while he's on feeds, and we're not aware, because how on earth would we even know? His face was flushed but clammy, he was acting really tired, and he was insistent that he's "really thirsty" - which is something that he very rarely says. Except for the times that he acts exactly like that, late at night. Or maybe he's just 3 and manipulative. Ugh. I hate this.
We'll be checking his BG a few times a day, and probably also overnight, with additional checks anytime he's symptomatic. I know that we are okay, and we can do this. There's just suddenly so much more to think about. How will we prep him for scopes? What about tube changes? He needs to go NPO so he can be sedated. But now we can't safely go NPO. What happens when his pump breaks (a-g-a-i-n) and Homecare says they'll be there in "a few hours"? Do we wait for him to crash? Proactively bring him in for dextrose, knowing that he'll definitely crash?
The biggest positive is that we're told most kids grow out of this. We get to repeat this little slumber party next year, to see if he can pass the 36 hour fast. That seems so absurdly impossible right now. But eventually, most kids do.
So Endocrinology is ready to release us, and we'll be going home tomorrow morning sometime. We're spending one more night for a GI concern - his motility seems to have slowed way down and we're worried about heading home without being sure he's going to continue tolerating feeds, especially now that not tolerating feeds is not an option.
It's a good thing he's cute...
Annie's party ended uneventfully at shift change (7am) and Aidan was holding steady around 70. Our morning nurse got him at critical on her very first check - 46. When she rechecked him, he was 51, and when she sent off bloodwork for confirmation, it came back at 51. Just a hair over "critical." So the fast continued. His checks at 8:30 were in the low 50's. Then, at 9am, a new wrinkle. BG 51, but ketones were suddenly at 3.3. WHAT? Where did that come from? The 9:30 check showed BG 41, ketones 3.8 - so the fast officially ended, both for low BG and high ketones. Things happened pretty quickly after that - the lab confirmed his BG at 41, and the first round of bloodwork went in. He got a shot of Glucagon (a hormone that's supposed to bring up his BG quickly) at 9:45, which immediately made him nauseous, and didn't even help. He fell down to 33 by 10:00, and they decided to halt the test and put him back on IV dextrose. 15 minutes later, on IV dextrose, he was up to 50, which is still too low, but heading in the right direction. He spent the rest of the morning slowly working his way back up to 70 on IV dextrose.
 |
| Not a happy camper |
1. This tells us that Aidan's form of hypoglycemia is called ketotic hypoglycemia. This basically just means that his body doesn't tolerate fasting, and while his blood sugar falls, he produces ketones, which are no bueno.
2. We still don't have any answers about his poor growth. I guess we'll have to take that up with his Endocrinologist when we follow up with her in a few weeks for the rest of the bloodwork results.
The plan is to remain on 24/7 feeds, since fasting proves dangerous to him, but it's thought that with a careful wean, Aidan could probably tolerate up to 4 hours off feeds safely. He absolutely cannot just halt feeds (you know, exactly the thing we were doing). We've been instructed that if he's sick and not tolerating feeds for more than 2 hours, we are to take him to an Emergency Room for IV dextrose. We have a letter explaining his condition as "severe" and giving treatment protocols for him. It uses intentionally terrifying phrases like "seizures" and "brain damage" when explaining the consequences of untreated hypoglycemia. Honestly, it's kind of sobering and gives a new air of fragility to an already nerve-wracking kid.
The way he acted with critically low BG and high ketones makes me concerned that his sugars are low and ketones are high from time to time at home while he's on feeds, and we're not aware, because how on earth would we even know? His face was flushed but clammy, he was acting really tired, and he was insistent that he's "really thirsty" - which is something that he very rarely says. Except for the times that he acts exactly like that, late at night. Or maybe he's just 3 and manipulative. Ugh. I hate this.
We'll be checking his BG a few times a day, and probably also overnight, with additional checks anytime he's symptomatic. I know that we are okay, and we can do this. There's just suddenly so much more to think about. How will we prep him for scopes? What about tube changes? He needs to go NPO so he can be sedated. But now we can't safely go NPO. What happens when his pump breaks (a-g-a-i-n) and Homecare says they'll be there in "a few hours"? Do we wait for him to crash? Proactively bring him in for dextrose, knowing that he'll definitely crash?
The biggest positive is that we're told most kids grow out of this. We get to repeat this little slumber party next year, to see if he can pass the 36 hour fast. That seems so absurdly impossible right now. But eventually, most kids do.
So Endocrinology is ready to release us, and we'll be going home tomorrow morning sometime. We're spending one more night for a GI concern - his motility seems to have slowed way down and we're worried about heading home without being sure he's going to continue tolerating feeds, especially now that not tolerating feeds is not an option.
It's a good thing he's cute...
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