I'm not sure if I've ever really posted about scopes. We've done a few now, and I remember before the first one, I was so nervous. I had no idea what to expect. Aidan was not even a year old when we did his first scopes - and the thought of surgery for your infant is probably the most nerve-wracking thing ever.
My disclaimer - this is how they go for us. In our world, a scope is an endoscopy and a colonoscopy. So the prep and the experience are specific to that.
My other disclaimer - Yes, I am aware that this scope took place two months ago. I'm a busy mommy. I meant to write about this sooner, but life happens.
Step 1: We visit our GI and agree that we're going to Scope. Maybe it's because we've been trying a new food. Maybe it's because we haven't changed anything but his symptoms have flared up. Whatever the case, the scope is ordered and we are told that scheduling will give us a call.
This happens within a few days, which is exciting, but then they smack you with the news that the next opening is in something absurd like six weeks.
Maybe it would be sooner if we scoped down at Main Campus... I don't know... But we always scope at Exton. Going down to Main Campus is really a bigger adventure and we try to avoid it. I think it tends to bring me flashbacks of inpatient stays. Main Campus just *feels* different to me.
Step 2: We wait. And we try to change nothing. And that's nowhere near as easy as it sounds. If he accidentally eats something, the whole scope could be worthless. If he gets sick, he may not be healthy enough come scope day. OR, he may seem healthy enough, but they may refuse him anyway. See Step 3.
Step 3: About two weeks before Scope Day, CHOP calls to discuss his medical history. They ask a slew of very important questions, and it's really important to be truthful. But be careful not to be too truthful. Example - it's important to tell them that he's used his inhaler within the past six months - because this means he needs to use it in the days leading up to and on the morning of his surgery. It's important not to volunteer that he has a runny nose today, two weeks before surgery, because they will threaten to cancel surgery. I am not even joking. Unless the kid is critically ill, keep your mouth shut. They will examine him the morning of surgery and if he's too sick to proceed, they won't. Cancelling two weeks out because he might be sick when the day comes around is just silly.
Step 4: We wait. Notice a trend? We wait, we continue trying to change nothing, and we hope against hope not to get sick. This is where I get psychotic about people coming to visit us while sick, or sick-ish, and I tend to kind of hide out in hopes of keeping him healthy.
Step 5: Two or three days before the Scope, CHOP calls to go over his prep. I'm not sure how unique our prep is because Aidan is not an eater, but here's what it looks like.
Day -2: Full Liquid Diet. This means formula only, which is all he ever gets anyway. No biggie.
Day -1: Clear Liquid Diet: There would be more options for eaters (like broth or jellow or sprite), but for Aidan this means just unflavored pedialyte, starting at 8am and continuing all day and night. Thankfully, we can tube it in, because unflavored pedialyte is absolutely disgusting and there's no way on earth he'd drink that all day.
Day 0: NPO after 4am. I programmed the pump so that the clear liquids from Day -1 ended at 4am. I have a serious love/hate relationship with the pump, but this is one of the times that I love it. A little bit of quick math lets me figure out how to stop feeds when I need them stopped, no waking up needed.
Alas, my smug slumber wouldn't last long, since we had to wake up at 5am to give him an enema. I took no pictures. You're welcome. I'm not sure how this will work when he's out of diapers, but that's not my worry for today. It's easy peasy lemon squeezy with a diapered kiddo. By which I mean he writhes and screams and clenches things that I don't even know how to clench, and for the love of all things holy, why are we doing this at 5am!?
When we arrive at CHOP, we change into bright yellow CHOP jammies and I get the iPad out to keep Aidan entertained while we wait. Surgeries happen by age, and he's still young enough to be very early in the morning. Our arrival was scheduled for 6:45am.
When we are called back, Aidan gets a quick checkup to make sure he's healthy enough to scope. Happily enough, he is. Anesthesia comes to talk to us about their plan (for some reason, there was a mix-up and no one ordered pre-meds for him. With Aidan's severe anxiety around hospitals, pre-meds are a must and I refused to proceed without them. So there was a slight delay, but we did eventually get some Versed on board.). The GI performing the scope also stops by to talk about symptoms and anything that may be new or different since we last saw him. By now, Aidan's getting pretty loopy from the meds, plus it's ridiculous-o'clock, and we Shieldses sleep in.
The scope takes something like 45 minutes - it would be shorter if it were just an upper or just a lower - but since it's both, and since they have anesthesia to worry about, I end up sitting there FOREVER while parents of ear tube patients come in and out of the room like there's a revolving door (seriously - ear tubes are like a twelve second procedure)
When the doctor finishes up, he comes out to see me and tells me how great it went. He always has some pictures to show and he tells me how the scope went visually (our scopes are always visually beautiful, no matter how many eosinophils are present).
I do have a couple of cool pictures to share from this scope - it must be his first scope since getting the feeding tube, because we definitely don't have any pictures like this from past scopes!
As I'm gazing fondly at Aidan's jejunum, a nurse comes to fetch me and inform me that Aidan's ready to be seen and adored. And when I get to him, someone's clearly already been adoring him and his puppy. Puppy pup is wearing Aidan's beloved socks, and Aidan is all tucked in and high on life (and oxygen).
It is always very hard for Aidan to wake up. I've heard that they wake up more easily without pre-meds, but for us, it's just not worth it. I talk with the nurse for a bit while he snoozes - she goes over how the procedure went (fine), and what I should expect when we get home (really nothing special, he might be groggy but overall he'll be just fine, and he'll be ready to go to school tomorrow). We turn off his oxygen, and it's time to wake him up.
I start by untucking him and starting to let in the dreaded cold air. No effect.
I hold him, I tickle him, nothing works. I finally have to strip him down and get him re-dressed. He's awake. And he's miserable.
His tummy hurts a little bit because they introduce some air during the scope - and as a family, we tend to be very emotional as a side effect of anesthesia - but he's really none the worse for wear.
In this particular case, he cried all the way home, at which point he and I both promptly fell asleep. But when he woke up? Good as new!
So really, that's it. That's a scope. The last piece is waiting another week or so for the GI's nurse to call with results. That's always the longest week of everyone's lives - and I have to imagine it's even more nerve-wracking when you're waiting to find out if you get to keep all of your newest foods!
I'd love to hear more about what scope days are like for you!
My disclaimer - this is how they go for us. In our world, a scope is an endoscopy and a colonoscopy. So the prep and the experience are specific to that.
My other disclaimer - Yes, I am aware that this scope took place two months ago. I'm a busy mommy. I meant to write about this sooner, but life happens.
Step 1: We visit our GI and agree that we're going to Scope. Maybe it's because we've been trying a new food. Maybe it's because we haven't changed anything but his symptoms have flared up. Whatever the case, the scope is ordered and we are told that scheduling will give us a call.
This happens within a few days, which is exciting, but then they smack you with the news that the next opening is in something absurd like six weeks.
Maybe it would be sooner if we scoped down at Main Campus... I don't know... But we always scope at Exton. Going down to Main Campus is really a bigger adventure and we try to avoid it. I think it tends to bring me flashbacks of inpatient stays. Main Campus just *feels* different to me.
Step 2: We wait. And we try to change nothing. And that's nowhere near as easy as it sounds. If he accidentally eats something, the whole scope could be worthless. If he gets sick, he may not be healthy enough come scope day. OR, he may seem healthy enough, but they may refuse him anyway. See Step 3.
Step 3: About two weeks before Scope Day, CHOP calls to discuss his medical history. They ask a slew of very important questions, and it's really important to be truthful. But be careful not to be too truthful. Example - it's important to tell them that he's used his inhaler within the past six months - because this means he needs to use it in the days leading up to and on the morning of his surgery. It's important not to volunteer that he has a runny nose today, two weeks before surgery, because they will threaten to cancel surgery. I am not even joking. Unless the kid is critically ill, keep your mouth shut. They will examine him the morning of surgery and if he's too sick to proceed, they won't. Cancelling two weeks out because he might be sick when the day comes around is just silly.
Step 4: We wait. Notice a trend? We wait, we continue trying to change nothing, and we hope against hope not to get sick. This is where I get psychotic about people coming to visit us while sick, or sick-ish, and I tend to kind of hide out in hopes of keeping him healthy.
Step 5: Two or three days before the Scope, CHOP calls to go over his prep. I'm not sure how unique our prep is because Aidan is not an eater, but here's what it looks like.
Day -2: Full Liquid Diet. This means formula only, which is all he ever gets anyway. No biggie.
Day -1: Clear Liquid Diet: There would be more options for eaters (like broth or jellow or sprite), but for Aidan this means just unflavored pedialyte, starting at 8am and continuing all day and night. Thankfully, we can tube it in, because unflavored pedialyte is absolutely disgusting and there's no way on earth he'd drink that all day.
Day 0: NPO after 4am. I programmed the pump so that the clear liquids from Day -1 ended at 4am. I have a serious love/hate relationship with the pump, but this is one of the times that I love it. A little bit of quick math lets me figure out how to stop feeds when I need them stopped, no waking up needed.
Alas, my smug slumber wouldn't last long, since we had to wake up at 5am to give him an enema. I took no pictures. You're welcome. I'm not sure how this will work when he's out of diapers, but that's not my worry for today. It's easy peasy lemon squeezy with a diapered kiddo. By which I mean he writhes and screams and clenches things that I don't even know how to clench, and for the love of all things holy, why are we doing this at 5am!?
 |
| Proof that we left on time! |
When we are called back, Aidan gets a quick checkup to make sure he's healthy enough to scope. Happily enough, he is. Anesthesia comes to talk to us about their plan (for some reason, there was a mix-up and no one ordered pre-meds for him. With Aidan's severe anxiety around hospitals, pre-meds are a must and I refused to proceed without them. So there was a slight delay, but we did eventually get some Versed on board.). The GI performing the scope also stops by to talk about symptoms and anything that may be new or different since we last saw him. By now, Aidan's getting pretty loopy from the meds, plus it's ridiculous-o'clock, and we Shieldses sleep in.
 |
| I think he's a cute little druglet, don't you? |
When the doctor finishes up, he comes out to see me and tells me how great it went. He always has some pictures to show and he tells me how the scope went visually (our scopes are always visually beautiful, no matter how many eosinophils are present).
I do have a couple of cool pictures to share from this scope - it must be his first scope since getting the feeding tube, because we definitely don't have any pictures like this from past scopes!
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| This is the balloon that holds the button in place, right on the inside of his stomach wall. |
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| This is the tube that goes down into the jejunum and feeds into Aidan's intestines. |
It is always very hard for Aidan to wake up. I've heard that they wake up more easily without pre-meds, but for us, it's just not worth it. I talk with the nurse for a bit while he snoozes - she goes over how the procedure went (fine), and what I should expect when we get home (really nothing special, he might be groggy but overall he'll be just fine, and he'll be ready to go to school tomorrow). We turn off his oxygen, and it's time to wake him up.
I start by untucking him and starting to let in the dreaded cold air. No effect.
I hold him, I tickle him, nothing works. I finally have to strip him down and get him re-dressed. He's awake. And he's miserable.
 |
| How could you dooooooooooooo this to me?! |
In this particular case, he cried all the way home, at which point he and I both promptly fell asleep. But when he woke up? Good as new!
So really, that's it. That's a scope. The last piece is waiting another week or so for the GI's nurse to call with results. That's always the longest week of everyone's lives - and I have to imagine it's even more nerve-wracking when you're waiting to find out if you get to keep all of your newest foods!
I'd love to hear more about what scope days are like for you!
Aidan is so lucky to have such a wonderful and caring Mommy. :)
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