Yesterday, we trudged back to Children's Hospital for Jack's Arginine/Insuline Tolerance test designed to check growth hormone levels. This test stimulates the pituitary gland to produce growth hormones, and if the test proves that Jack does indeed have a growth hormone deficiency, this might be what's impacting his occasional bouts of hypoglycemia. Somehow, it's all connected. If I had an hour and a strong margarita in me, I might be able to make more sense of it all for you. Alas, it's 7:30am, and I'm delirious and barely through my first cuppa joe. So, bear with me, friends.
The test itself is about two and half hours long, during which they take 10 blood samples. They hooked Jack up to an IV to make the dispensing of medicine and blood work go much easier. Jack, who before this point was his happy-go-lucky self, saw the various IV gear and, I think, recognized it from an earlier hospital visit. The incredulous look he threw at the nurse was classic. He's a trooper though and managed to stay seated for the first hour of the test, happily playing with the iPad.
Side note: I would like to personally thank the creative team at Apple for inventing this marvelous piece of technology. Not only is watching our little Jack navigate the iPad faster than an any savvy adult completely fascinating, but also it saves our tired butts during these grueling hospital visits. From the bottom of my heart, I love you, Apple. You rock.
At the top of the second hour, the nurse administered the insulin, which would dramatically drop his blood sugar level. This is the scary bit. Another nurse needed to be in the room to help monitor his behavior, just in case his levels dropped to life-threatening levels. They had a charge of sugar water to surge into his IV, if that happened. His blood sugar dropped to 16 (remember, anything below 70 is low), and the effects of hypoglycemia are sleepiness and irritability, among other things. We needed to keep Jack awake for 7 minutes to get the next blood sample, which was horribly difficult. He made this constant part-whine/part-scream that gutted me, and he desperately wanted to pass out - more than a lush after an all-night bender. So, the nurse gave us ice chips to rub on his body to keep him alert. He started shaking slightly and would fall asleep within seconds until the next ice cube hit his skin. To say Jack hated us at this moment is an understatement.
Needless to say, we survived the ordeal. Fifteen minutes later, Jack's blood sugar rose to normal levels after a cup of juice. And, thank the dear lord, after falling asleep at 6:45pm, he slept through the night last night. Yeah, we were up at 6am, but having a night of uninterrupted sleep is a gift!
We'll have the test results in about two weeks. If he is growth hormone deficient, he'll need hormone injections several times/month, probably through puberty, that we'll learn how to administer here at home. Those will help him physically develop at a typical pace. I'll keep you posted when we get the news!
Showing posts with label hypoglycemia. Show all posts
Showing posts with label hypoglycemia. Show all posts
Thursday, August 4, 2011
Sunday, June 26, 2011
Home Again, Home Again...Jiggety Jig?
Three days, two nights at Children's Hospital.
Jack enduring a 24-hour fast.
What seemed like 20,000 toe pricks to test blood sugar.
Lowest blood sugar during the fast: 68.
Probably a $35,000 medical bill heading our way.
Five medical doctors giving us NO input into why our son's blood sugar fell to a critical level on Thursday.
Here we are, home again and exactly where we were last December with no answers. To the doctors' credit, they tried everything to get his levels to fall low enough to run the blood tests needed, but they could not duplicate the conditions that prompted the blood sugar fall: a virus and high fever. Their parting advice to us? Make sure Jack eats three meals a day and three snacks, one before bed. Like we don't do that already! Since his autism diagnosis, we already obsess about every bite that goes into his mouth. One positive they tried to relate to us is that he CAN keep his blood sugar within a healthy range for 24-hours without food. Before discharge, we had this enlightening conversation with the doctor:
doc: Do you have any questions for us?
me: But, doc, this is so bizarre. Why did this happen twice? Do we need to be extra vigilant when he's sick? Why would this happen if he's otherwise not showing signs of hypoglycemia and ate good meals the prior day?
doc: You're right. It is bizarre. Yes, it's a good idea to watch him closely when he's sick. Remember, three meals/three snacks per day.
me: Yeah, thanks.
me (thinking): Douchebag.
There are three blood tests taken last night during a normal sugar level that did not return from the lab before we left, and the endocrinology unit will call us this week with those results. We could not start the battery of tests needed to really get to the bottom of this because his blood sugar never reached that critical level. They also referred us to the Neurology Department for Jack's autism. I'm not sure what that will entail, but it's another route to pursue to maybe find some answers.
Funny thing about the hospital...every person that walks into the room asks you the same questions over and over and over again. The staff obviously does not read the reports taken from the ER, the nurses station, from doctors visiting earlier in the day, or from prior hospital visits. Here's a funny conversation we had with a nurse, who obviously had no idea that Jack had autism or could not verbalize, which was something we told at least ten people prior to this moment, ten people who either wrote or typed this information into a report:
nurse: Hey buddy! How are you?
(Jack stares at her and turns toward Bob's arm)
nurse: Oh, are you being shy? Don't worry, we'll have you talking by the end of the night!
me: Actually, he's nonverbal.
Bob: But if you could get him talking, that would be great.
(Awkward silence)
nurse: Oh...okay. (uneasy giggle) Uh, well, if you need anything, give us a buzz!
Well, I guess we go back to our "normal" now. Time to reclaim the house back from the cats and their stink. Time to get back to work and refocus. Time to shake off the last three days and move forward. We can't help asking, "What next?" We're on edge, for sure. Since November, we've been reluctantly riding a downward spiral of bad news, bad luck and bad juju. If anyone knows a good witchdoctor or voodoo priestess, give me a call. We'll try anything at this point!
Jack enduring a 24-hour fast.
What seemed like 20,000 toe pricks to test blood sugar.
Lowest blood sugar during the fast: 68.
Probably a $35,000 medical bill heading our way.
Five medical doctors giving us NO input into why our son's blood sugar fell to a critical level on Thursday.
Here we are, home again and exactly where we were last December with no answers. To the doctors' credit, they tried everything to get his levels to fall low enough to run the blood tests needed, but they could not duplicate the conditions that prompted the blood sugar fall: a virus and high fever. Their parting advice to us? Make sure Jack eats three meals a day and three snacks, one before bed. Like we don't do that already! Since his autism diagnosis, we already obsess about every bite that goes into his mouth. One positive they tried to relate to us is that he CAN keep his blood sugar within a healthy range for 24-hours without food. Before discharge, we had this enlightening conversation with the doctor:
doc: Do you have any questions for us?
me: But, doc, this is so bizarre. Why did this happen twice? Do we need to be extra vigilant when he's sick? Why would this happen if he's otherwise not showing signs of hypoglycemia and ate good meals the prior day?
doc: You're right. It is bizarre. Yes, it's a good idea to watch him closely when he's sick. Remember, three meals/three snacks per day.
me: Yeah, thanks.
me (thinking): Douchebag.
There are three blood tests taken last night during a normal sugar level that did not return from the lab before we left, and the endocrinology unit will call us this week with those results. We could not start the battery of tests needed to really get to the bottom of this because his blood sugar never reached that critical level. They also referred us to the Neurology Department for Jack's autism. I'm not sure what that will entail, but it's another route to pursue to maybe find some answers.
Funny thing about the hospital...every person that walks into the room asks you the same questions over and over and over again. The staff obviously does not read the reports taken from the ER, the nurses station, from doctors visiting earlier in the day, or from prior hospital visits. Here's a funny conversation we had with a nurse, who obviously had no idea that Jack had autism or could not verbalize, which was something we told at least ten people prior to this moment, ten people who either wrote or typed this information into a report:
nurse: Hey buddy! How are you?
(Jack stares at her and turns toward Bob's arm)
nurse: Oh, are you being shy? Don't worry, we'll have you talking by the end of the night!
me: Actually, he's nonverbal.
Bob: But if you could get him talking, that would be great.
(Awkward silence)
nurse: Oh...okay. (uneasy giggle) Uh, well, if you need anything, give us a buzz!
Well, I guess we go back to our "normal" now. Time to reclaim the house back from the cats and their stink. Time to get back to work and refocus. Time to shake off the last three days and move forward. We can't help asking, "What next?" We're on edge, for sure. Since November, we've been reluctantly riding a downward spiral of bad news, bad luck and bad juju. If anyone knows a good witchdoctor or voodoo priestess, give me a call. We'll try anything at this point!
Thursday, June 23, 2011
Hello, Nurse!
Guess where I am? C'mon...just guess. There's a little hint in the blog title.
The hospital, you say? Ding, ding, ding! Circle gets the square.
I'm sipping hospital grade coffee from my makeshift sofa bed and watching Jack sleep in a caged crib right this very minute. Time? 11:12pm. Some folks who witnessed the diasater that was our Christmas holiday might recall Jack's blood sugar reaching an all-time low of 8. Yes, 8. Normal blood sugar levels fall between 90 and the mid-100s. A high fever and a nasty virus caused his levels so drop that viciously, and after a hypoglycemic seizure and three days at Children's hospital, he was right as rain. However, his blood work never gave us any indication WHY this happened so rapidly.
Flash-forward to yesterday. Jack spikes a fever of 101.5, but other than being a little more spacey than usual, he seemed fine. Ate good meals and played in his typical Jack manner. This morning he was sluggish and refused to eat breakfast. Around 11am he fell asleep on the couch...not typical but he was under the weather. He slept. He became catatonic. Two hours went by, and I started wiggling his legs and quietly called his name, "Jaaack. Time to wake up!". Nothing but a slight leg movement. I called Bob who agreed with me that the poor guy is probably just exhausted from being sick. I let him sleep another 30 minutes. I started calling his name a little louder and wiggling him more vigorously. Nothing.
I'm in full freak out mode at this point. I grab our handy dandy blood sugar tester thingy, which from my description you can tell I obviously never used before, and unfolded the directions. Reading, reading...uh-huh, I think I got it. Crap,I can't get the lance to stay in! Dammit! Okay, okay. Got it. Time to prick his finger. Done. Why isn't it working? Breathe. Not enough blood. Prick a second time. Jack moans. It's taking a reading...31. Fuck. This can't be happening. I call Jack's pediatrician who advises us to hastily head to the ER. Bob is working out a way to escape his shift, and Amanda escorts our sad asses to the ER where we sit for five hours before moving upstairs to a room. Basically, the ER docs think, "Hmmm...that's strange this happened again. Let's keep him here and watch him a while to see what happens next." Apparently, the endocrinologists want to wait until his blood sugar falls below 70 to draw blood and start testing. If it falls below 70. In the ER, after eating some chicken and sweet potato fries, he got back up to 135. Two hours ago, it fell down to 83.
Part of me wants it to fall a wee bit lower to get these tests started. Am I going to panic attack every time Jack gets a fever now, worrying about his blood sugar levels and praying he doesn't seize? Why does his metabolism go haywire every time he gets a virus? According to the doctors, this is a severe and abrupt physical reaction to a minor malady. There was mention of bringing in the neurology team as well because there's speculation that this goes in hand with his autism. Great. But we won't get answers unless his blood sugar falls below 70. Another problem with no easy solution...uncertainty ah-gain. Do you see the common thread in this daily digest yet?
Well, the nurse will be here in a few minutes for another finger prick. I'm going to gulp down the rest of this crap coffee, which doesn't improve as it cools, and wait for the next reading. Lord, have mercy.
The hospital, you say? Ding, ding, ding! Circle gets the square.
I'm sipping hospital grade coffee from my makeshift sofa bed and watching Jack sleep in a caged crib right this very minute. Time? 11:12pm. Some folks who witnessed the diasater that was our Christmas holiday might recall Jack's blood sugar reaching an all-time low of 8. Yes, 8. Normal blood sugar levels fall between 90 and the mid-100s. A high fever and a nasty virus caused his levels so drop that viciously, and after a hypoglycemic seizure and three days at Children's hospital, he was right as rain. However, his blood work never gave us any indication WHY this happened so rapidly.
Flash-forward to yesterday. Jack spikes a fever of 101.5, but other than being a little more spacey than usual, he seemed fine. Ate good meals and played in his typical Jack manner. This morning he was sluggish and refused to eat breakfast. Around 11am he fell asleep on the couch...not typical but he was under the weather. He slept. He became catatonic. Two hours went by, and I started wiggling his legs and quietly called his name, "Jaaack. Time to wake up!". Nothing but a slight leg movement. I called Bob who agreed with me that the poor guy is probably just exhausted from being sick. I let him sleep another 30 minutes. I started calling his name a little louder and wiggling him more vigorously. Nothing.
I'm in full freak out mode at this point. I grab our handy dandy blood sugar tester thingy, which from my description you can tell I obviously never used before, and unfolded the directions. Reading, reading...uh-huh, I think I got it. Crap,I can't get the lance to stay in! Dammit! Okay, okay. Got it. Time to prick his finger. Done. Why isn't it working? Breathe. Not enough blood. Prick a second time. Jack moans. It's taking a reading...31. Fuck. This can't be happening. I call Jack's pediatrician who advises us to hastily head to the ER. Bob is working out a way to escape his shift, and Amanda escorts our sad asses to the ER where we sit for five hours before moving upstairs to a room. Basically, the ER docs think, "Hmmm...that's strange this happened again. Let's keep him here and watch him a while to see what happens next." Apparently, the endocrinologists want to wait until his blood sugar falls below 70 to draw blood and start testing. If it falls below 70. In the ER, after eating some chicken and sweet potato fries, he got back up to 135. Two hours ago, it fell down to 83.
Part of me wants it to fall a wee bit lower to get these tests started. Am I going to panic attack every time Jack gets a fever now, worrying about his blood sugar levels and praying he doesn't seize? Why does his metabolism go haywire every time he gets a virus? According to the doctors, this is a severe and abrupt physical reaction to a minor malady. There was mention of bringing in the neurology team as well because there's speculation that this goes in hand with his autism. Great. But we won't get answers unless his blood sugar falls below 70. Another problem with no easy solution...uncertainty ah-gain. Do you see the common thread in this daily digest yet?
Well, the nurse will be here in a few minutes for another finger prick. I'm going to gulp down the rest of this crap coffee, which doesn't improve as it cools, and wait for the next reading. Lord, have mercy.
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