The doctors rounded our way around 9:30, and came up with the day's plan. It's always interesting to hear someone else give your kid's story - what's important and relevant, and what's not. This part, at least, is familiar enough. Grumpy old doctors, residents trying to impress them, nurses, and whoever else joins the cluster all gather around the door and discuss your child.
The plan was to start an IV at some point today so that later tonight, we could wean down his feeds and start the fast. Silly me, I thought we'd do the fast today and not tonight. But it sounds like actually we'll be doing more of the same today as we did yesterday - continuing on normal feeds while checking his blood sugar every three hours. His blood sugar was stable overnight, though it fluctuated between 79 and 110. I still wonder why it goes down to the 70s when he's on feeds.
The Endocrine doctor, Dr. Langdon, came by around 11:30 to discuss Aidan and the plan. He has a low IGF1 level (40) - "impressively low for a three year old" - but they don't know if it's low because he's got a growth hormone deficiency, or because he's malnourished (well isn't that just a knife in the gut?). He is short for his parental curve, but he does seem to have good growth velocity. He was born near the 50th percentile, fell to the 10th percentile by 2 months old, hovered between the 3-5th percentile until he was 1 1/2, and has been in the .5-1st percentile for the past 2 years. So yes, he's fallen, but he's remained on his curve for the past two years. There are some clinical signs of growth hormone deficiency that he doesn't display, but others that he does - so there are mixed indications. We really don't know what to think at the moment.
I have trouble believing he's malnourished, honestly. The formula is supposed to be nutritionally complete. He's finally putting on weight. Can he really be malnourished? Now I just have this image in my head of this guy, Dr. Langdon, shaking his head and saying "what a terrible disease" (the Eosinophilic Gastroenteritis). I immediately felt defensive, because we feel like we have it so well controlled. I just hope it hasn't been at the expense of his growth and development :-/
Sarah from Nutrition came in to talk, and helped me feel better about the malnutrition thing. I don't know if he's been getting what he needs or not - I suspect he has been, because he's been gaining weight - but if he hasn't, it's probably because of a malabsorption-type issue. Not because we're not giving him what he needs. We've worked so hard to find a formula that works, and when we found it and fought for it and use it and still hear that may be malnourished - it's hard not to feel defeated. I hope the growth hormone stim test gives us more answers.
You know what I forgot to mention? The whole hospital transitioned to Infinity pumps! I love this! I know exactly what the alarms means and how to shut them up! Yes, I know we aren't supposed to touch the pumps, but talk to me again at 3am when it's been alarming for 15 minutes and nobody's answered the nurse call button. Pausing the alarm is a perfectly reasonable course of action.
The other reason this is awesome is that it gives us the opportunity to finish out the feed we brought from home while CHOP inevitably makes a debacle out of finding his formula.
By awesome coincidence, CHOP is having a radiothon this week. There are activities all day today and tomorrow. We ventured out of the room at lunchtime to meet Elsa, who is evidently some uber-popular chick from Frozen. Aidan was unimpressed, to say the least. He did his best Joe Friday impression (am I dating myself?):
Who are you? What is this dress? Is that your hair? What are you doing here? Are you sick? Where's your tubie? Are you coming to see Dr. Liacouras? Do you have allergies?
He then decided he was done with her highness, leaned in close, and said "I would like to go find a canyon today." And that was it. Little girls were dying to meet her, and he was so bored he couldn't even stand it a moment longer. Not long after that, someone started banging cymbals together - in the huge echo-y atrium - and Aidan was done-zo. He gave Spider-Man a once-over, nonchalantly informed him that "food is not safe for my mouth, I have allergies.", and hightailed it back up to his room. I'm not sure I'll be able to coax him out of bed again.
So that was today. Aidan's blood sugars were monitored all day while he was on feeds, to continue establishing his baseline. Around 7:00pm, the IV team came in and attempted to place two IV's - one to administer fluids, and the other for blood draws. He needs two, because they don't want the blood they draw to be potentially contaminated by anything they push in through his IV - so they can't draw blood from the same site that they're using to administer something like Glucagon or Dextrose.
I said attempted because, as we all know, Aidan is the worst stick in the history of bad sticks. They blew three veins before finally getting their fourth (and final) one placed. That one will be used for blood draws, but we still needed something for IV fluids. So they gave him an hour off, then hotpacked his left arm for an hour, and tried again. This was when things got sad - Aidan realized he had no hands left to play with toys, iPads, or crayons. It was a long hour.
When IV team came back, they meant business and they got that IV placed like it was their job. Which, you know, it is. But still, it was pretty great. It really isn't their fault that his veins are so awful. So now he's pretty incapacitated and looks fairly pathetic.
We'll start up his fluids and hopefully get this fast process started soon. It's supposed to include weaning his feeds down over 2 hours, and then weaning his fluids down. During that time, we'll be checking his blood sugars hourly (potentially half-hourly) and waiting to see how long he lasts before going low (70) and then critical (50). When he goes low and/or critical, there is bloodwork that needs to be drawn immediately (hence the second IV).
My worry with this approach is whether we'll be able to recreate what we saw a few weeks ago. We don't normally wean him down over 2 hours, while keeping him on IV dextrose, which we then wean down. Which they know, so I'm sure they have their reasons. I just hope we get some information that helps us in our daily life, you know?
One more picture for the night... It's been a really rough night with way too many needles, and it's all been really unfair to him, but you know what? Nothing gets him down for long.
The plan was to start an IV at some point today so that later tonight, we could wean down his feeds and start the fast. Silly me, I thought we'd do the fast today and not tonight. But it sounds like actually we'll be doing more of the same today as we did yesterday - continuing on normal feeds while checking his blood sugar every three hours. His blood sugar was stable overnight, though it fluctuated between 79 and 110. I still wonder why it goes down to the 70s when he's on feeds.
The Endocrine doctor, Dr. Langdon, came by around 11:30 to discuss Aidan and the plan. He has a low IGF1 level (40) - "impressively low for a three year old" - but they don't know if it's low because he's got a growth hormone deficiency, or because he's malnourished (well isn't that just a knife in the gut?). He is short for his parental curve, but he does seem to have good growth velocity. He was born near the 50th percentile, fell to the 10th percentile by 2 months old, hovered between the 3-5th percentile until he was 1 1/2, and has been in the .5-1st percentile for the past 2 years. So yes, he's fallen, but he's remained on his curve for the past two years. There are some clinical signs of growth hormone deficiency that he doesn't display, but others that he does - so there are mixed indications. We really don't know what to think at the moment.
I have trouble believing he's malnourished, honestly. The formula is supposed to be nutritionally complete. He's finally putting on weight. Can he really be malnourished? Now I just have this image in my head of this guy, Dr. Langdon, shaking his head and saying "what a terrible disease" (the Eosinophilic Gastroenteritis). I immediately felt defensive, because we feel like we have it so well controlled. I just hope it hasn't been at the expense of his growth and development :-/
Sarah from Nutrition came in to talk, and helped me feel better about the malnutrition thing. I don't know if he's been getting what he needs or not - I suspect he has been, because he's been gaining weight - but if he hasn't, it's probably because of a malabsorption-type issue. Not because we're not giving him what he needs. We've worked so hard to find a formula that works, and when we found it and fought for it and use it and still hear that may be malnourished - it's hard not to feel defeated. I hope the growth hormone stim test gives us more answers.
You know what I forgot to mention? The whole hospital transitioned to Infinity pumps! I love this! I know exactly what the alarms means and how to shut them up! Yes, I know we aren't supposed to touch the pumps, but talk to me again at 3am when it's been alarming for 15 minutes and nobody's answered the nurse call button. Pausing the alarm is a perfectly reasonable course of action.
The other reason this is awesome is that it gives us the opportunity to finish out the feed we brought from home while CHOP inevitably makes a debacle out of finding his formula.
 |
| Infinity Pump! |
Who are you? What is this dress? Is that your hair? What are you doing here? Are you sick? Where's your tubie? Are you coming to see Dr. Liacouras? Do you have allergies?
He then decided he was done with her highness, leaned in close, and said "I would like to go find a canyon today." And that was it. Little girls were dying to meet her, and he was so bored he couldn't even stand it a moment longer. Not long after that, someone started banging cymbals together - in the huge echo-y atrium - and Aidan was done-zo. He gave Spider-Man a once-over, nonchalantly informed him that "food is not safe for my mouth, I have allergies.", and hightailed it back up to his room. I'm not sure I'll be able to coax him out of bed again.
 |
| There is no such thing as too many of these pictures. |
 |
| Hotpacks - we hate them! |
I said attempted because, as we all know, Aidan is the worst stick in the history of bad sticks. They blew three veins before finally getting their fourth (and final) one placed. That one will be used for blood draws, but we still needed something for IV fluids. So they gave him an hour off, then hotpacked his left arm for an hour, and tried again. This was when things got sad - Aidan realized he had no hands left to play with toys, iPads, or crayons. It was a long hour.
 |
| Sad boy |
 |
| He's not sleeping, he's just hamming it up, and refusing to look at me is sadder than anything. |
My worry with this approach is whether we'll be able to recreate what we saw a few weeks ago. We don't normally wean him down over 2 hours, while keeping him on IV dextrose, which we then wean down. Which they know, so I'm sure they have their reasons. I just hope we get some information that helps us in our daily life, you know?
One more picture for the night... It's been a really rough night with way too many needles, and it's all been really unfair to him, but you know what? Nothing gets him down for long.
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