Today started for good around 6am when Nurse Daniel came in to give Aidan his enema in preparation for surgery. We had results within a few minutes and it was a little bit exciting because it's a step in the direction that we need to go - surgery, biopsies, and hopefully answers.
Megan came around 7 and we were really happy to have her. CHOP cribs are way less lonely when you have company.
Around 8:30, the Pediatrician and the GI Attending came in to discuss The Plan, which was indeed to have surgery sometime in the afternoon (Upper and Lower Endoscopies with biopsies - woohoo!). We discussed the results of yesterday's Gastric Emptying Study (normal) and what the next steps were.
It kind of boils down to this - the emptying study is not showing that motility is the problem. If we wanted to, we could still treat with motility and/or nausea drugs - but given the normal emptying study, it's not super likely that it would help. In my mind, this means the problem is either a reaction to what we're putting in (the formula), or the inability of the stomach to do its job - not because of delayed emptying, but for some other reason.
So we're going to try to act on both of those possibilities. The scopes and biopsies should give us some information on what the formula is doing to his body. We won't have that information for several days at least - but it will be really good to know. To get to the issue with the stomach, we are going to change his G Tube to a GJ Tube.
The pros of a GJ tube - it feeds in directly to the intestines - which are below the stomach - so it's nearly impossible for him to vomit his feeds. There just won't be anything in his stomach to vomit up. He can still drink water by mouth if he wants to, but feeds that we run in via pump will go right into his intestines.
The cons - It sounds like we'd have to be a little more careful with it. While a G Tube can be turned around in the stoma (like an earring), the GJ Tube needs to be kept stationary. Also, we won't be able to do our own button changes - we'd have to come down to CHOP every three months to have Interventional Radiology do it. The bigger deal is that Aidan would need to be on a continuous feed for about 20 hours per day. Twenty. Of twenty four. So, like, always.
Anyway, the cons are minor compared to his inability to keep nutrition in his body - so we're going to move forward with the procedure at the same time as the scopes/biopsies. We're told that if it doesn't work out, we can pull it and put his G-Tube back in - no additional surgery or procedure required.
In the meantime, Aidan is sick and getting sicker. He is spiking fevers (102.5+) out of nowhere - his skin gets BRIGHT RED and he's so hot to the touch that I don't know how he's not hallucinating. They took a sample of his nasal slime and sent it off to be tested, so we're on contact precautions and droplet precautions until we get results tomorrow afternoon. That means that any CHOP staff coming in needs to wear masks and gowns to avoid his possible plague.
Respiratory has been in to listen to Aidan, but his lungs sound good despite all of the coughing. Which means the wheeze is coming from higher up and he doesn't have anything settled down into his lungs yet. This is good. But still, he's wheezing. And his energy level is minimal since he's getting no nutrition whatsoever.
So it wasn't a total shock when, around lunchtime, the doctor came in to let us know Aidan was too sick for surgery. And since it's not an emergency surgery, it can't be rescheduled until Monday. It's frustrating but I want him to be safe - and if they can't safely put him through surgery yet, I'm on board with waiting.
Nutrition stopped by to chat a bit about what we'll do once we're ready to start J feeds. I guess we'll stay with Elecare until we get biopsy results back.
The plan for the rest of today is to keep him on IV fluids, treat the fevers with tylenol, and start trying pedialyte bolus feeds. The first pedialyte bolus (4oz over 2h) went well - he kept it down, although about fifteen minutes after it was done, he started getting hot and feverish, with a more pronounced cough and bright red cheeks. He didn't throw up, so I guess we'll take it. The second feed (also 4oz over 2h) was even better - no reaction at all, that I noticed. So we'll do one or two more tonight.
I have been trying to get as much work as possible done while we plan for the next several days here. We're all tired and anxious but he's in the right place. We're just trying to work out who is coming when and who is staying where, and it's all the harder because we just don't know what to prepare for. If he has surgery on Monday - will he go home Tuesday? Wednesday? A week later? Who knows.
Tom was here for a few hours this afternoon/evening, and Aidan was really excited to see him. I hope Aidan's not too disappointed when he wakes up and Tom's gone later tonight :-/
Oh! We did get results of the snot test - Aidan has Metapneumovirus (hMPV). Not super serious or anything, but very contagious, so we stay on contact precautions. I guess I need to ask what, if anything, that diagnosis means for surgery on Monday. I'm not sure exactly how long he's been sick or how long hMPV takes to work its way out of the body - but I really hope that by Monday we're firing on enough cylinders to make surgery safe.
I guess I should get some sleep while I can - the doctor comes in at minimum once every hour to check Aidan's IV since we came so close to losing it last night.
Megan came around 7 and we were really happy to have her. CHOP cribs are way less lonely when you have company.
Around 8:30, the Pediatrician and the GI Attending came in to discuss The Plan, which was indeed to have surgery sometime in the afternoon (Upper and Lower Endoscopies with biopsies - woohoo!). We discussed the results of yesterday's Gastric Emptying Study (normal) and what the next steps were.
It kind of boils down to this - the emptying study is not showing that motility is the problem. If we wanted to, we could still treat with motility and/or nausea drugs - but given the normal emptying study, it's not super likely that it would help. In my mind, this means the problem is either a reaction to what we're putting in (the formula), or the inability of the stomach to do its job - not because of delayed emptying, but for some other reason.
So we're going to try to act on both of those possibilities. The scopes and biopsies should give us some information on what the formula is doing to his body. We won't have that information for several days at least - but it will be really good to know. To get to the issue with the stomach, we are going to change his G Tube to a GJ Tube.
The pros of a GJ tube - it feeds in directly to the intestines - which are below the stomach - so it's nearly impossible for him to vomit his feeds. There just won't be anything in his stomach to vomit up. He can still drink water by mouth if he wants to, but feeds that we run in via pump will go right into his intestines.
The cons - It sounds like we'd have to be a little more careful with it. While a G Tube can be turned around in the stoma (like an earring), the GJ Tube needs to be kept stationary. Also, we won't be able to do our own button changes - we'd have to come down to CHOP every three months to have Interventional Radiology do it. The bigger deal is that Aidan would need to be on a continuous feed for about 20 hours per day. Twenty. Of twenty four. So, like, always.
Anyway, the cons are minor compared to his inability to keep nutrition in his body - so we're going to move forward with the procedure at the same time as the scopes/biopsies. We're told that if it doesn't work out, we can pull it and put his G-Tube back in - no additional surgery or procedure required.
In the meantime, Aidan is sick and getting sicker. He is spiking fevers (102.5+) out of nowhere - his skin gets BRIGHT RED and he's so hot to the touch that I don't know how he's not hallucinating. They took a sample of his nasal slime and sent it off to be tested, so we're on contact precautions and droplet precautions until we get results tomorrow afternoon. That means that any CHOP staff coming in needs to wear masks and gowns to avoid his possible plague.
Respiratory has been in to listen to Aidan, but his lungs sound good despite all of the coughing. Which means the wheeze is coming from higher up and he doesn't have anything settled down into his lungs yet. This is good. But still, he's wheezing. And his energy level is minimal since he's getting no nutrition whatsoever.
So it wasn't a total shock when, around lunchtime, the doctor came in to let us know Aidan was too sick for surgery. And since it's not an emergency surgery, it can't be rescheduled until Monday. It's frustrating but I want him to be safe - and if they can't safely put him through surgery yet, I'm on board with waiting.
Nutrition stopped by to chat a bit about what we'll do once we're ready to start J feeds. I guess we'll stay with Elecare until we get biopsy results back.
The plan for the rest of today is to keep him on IV fluids, treat the fevers with tylenol, and start trying pedialyte bolus feeds. The first pedialyte bolus (4oz over 2h) went well - he kept it down, although about fifteen minutes after it was done, he started getting hot and feverish, with a more pronounced cough and bright red cheeks. He didn't throw up, so I guess we'll take it. The second feed (also 4oz over 2h) was even better - no reaction at all, that I noticed. So we'll do one or two more tonight.
I have been trying to get as much work as possible done while we plan for the next several days here. We're all tired and anxious but he's in the right place. We're just trying to work out who is coming when and who is staying where, and it's all the harder because we just don't know what to prepare for. If he has surgery on Monday - will he go home Tuesday? Wednesday? A week later? Who knows.
Tom was here for a few hours this afternoon/evening, and Aidan was really excited to see him. I hope Aidan's not too disappointed when he wakes up and Tom's gone later tonight :-/
Oh! We did get results of the snot test - Aidan has Metapneumovirus (hMPV). Not super serious or anything, but very contagious, so we stay on contact precautions. I guess I need to ask what, if anything, that diagnosis means for surgery on Monday. I'm not sure exactly how long he's been sick or how long hMPV takes to work its way out of the body - but I really hope that by Monday we're firing on enough cylinders to make surgery safe.
I guess I should get some sleep while I can - the doctor comes in at minimum once every hour to check Aidan's IV since we came so close to losing it last night.
Awww...poor little guy. Sorry I jumped into the middle here -- haven't been following the whole story -- but just wanted to give you some encouragement. You are doing a great job -- hang in there.
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