The second half of Day 1 was just as eventful as the first half. On admission to the floor, Aidan was weighed, and we found out that he's down to 10.3kg. He was 11.5kg on Monday. That's over 2.5 pounds lost in two days. While no one in the universe but me stresses over this, Aidan relaxes in a bed that he can't fall out of.
I busy myself trying to be entertaining, but even my hugely successful glovey-balloon falls flat. Tough crowd.
At noon, his IV fluids are upped from 40ml/h to 41ml/h. This passes for news around here, because the pumps are brand new (like, this is the first day anyone's used them) and nobody really knows how to work them.
Nikki left around 12:30 and not 15 minutes later, GI came in to discuss The Plan. We will be doing a Gastric Emptying Study, and possibly a repeat scope, and possibly changing the G-Tube to a GJ Tube. I have no idea why we're only possibly rescoping. I will be pushing hard for this. Not during this conversation though, because we're literally mid-sentence when the Attending is paged, and he left. He told me that he had "another patient" and he'd "try to stop back in."
Around 1:30, Megan arrives, and Aidan rejoices. We talk and catch up and get ready for the Gastric Emptying Study. I snapped a picture of Aidan relaxing - and he looked pretty good. Calm, relaxed, not pukey.
Not half an hour later, as we head down to Nuclear Medicine for the Study, we notice that Aidan's getting very red. He's also getting really cranky and whimpery, and hot.
The Gastric Emptying Study was traumatic. For me, mostly. I think Aidan was too far out of it to really understand what was happening around him, but basically they strapped him to a table and pushed in Elecare laced with Radioactive tracers. We would then get an hour and a half's worth of imaging to see where the feed goes (and how quickly). This way, we can tell if he's aspirating anything, or if the stomach isn't moving things through quickly enough.
The doctor ordered 6oz of Elecare for the test - but as they pushed in the third ounce, the vomiting started. At ounce four, they decided to stop administering the Elecare - he clearly wasn't keeping it down.
The most disturbing part was that he was strapped to this table while vomiting - totally unable to lift or turn his own head. I'm pretty sure I'll have nightmares about this forever.
By the time we got back to 5 South, Aidan was feeling pretty miserable. We had a new inept nurse, Dayna, and we strong-armed her into ponying up some Tylenol. I hate hearing him whimper with every single breath. Just not okay.
Around 6:15, the pediatrician working with the GI Attending came in to see me, and I complained about the Attending blowing us off. She asks how much of The Plan I'm aware of, and I said that all I knew was the Gastric Emptying Study, which we've now already done. Are we now planless? We're not, she assures me, we're scheduled for an upper endoscopy tomorrow. Um, no. Just no. We're not doing upper only. Not when his disease lives in the lower, and his GI has always done upper and lower together. I warn her that I won't be giving up without a fight - I feel very strongly about also doing lower. She says she'll "take it back to the team." I'm expecting a Battle Royale.
Around 8, Nurse Dayna decides it might be fun to start feeds. I disagree. I explain again that he couldn't even tolerate the 3oz needed for the Gastric Emptying Study. Another 7 ounces seems stupid to me. She eventually agrees to keep him on the IV, and keep him NPO after midnight in case GI agrees to add the lower scope to tomorrow's plan.
We are tired beyond tired, so Aidan and I both try to pass out. It works better for some than for others, for sure.
Around 10:15, I'm startled awake by a new nurse (Daniel?) who calmly explains that Aidan may have blown his IV, but they're calling the IV team to try saving it. The IV team arrives in the form of one tiny lady named Mimi - but who am I to complain - she saved it!
At the same time, Anesthesia stops by to confirm him for Surgery tomorrow (they only know about the upper - grr - we WILL be doing both!). I'm so tired at this point that I'm not even sure whether or not I signed consent. I must have, because he eventually left.
Around 1:30am, Aidan spiked a high fever again, and even with Tylenol, he spent the next 2.5 hours screaming. Screaming to be held, screaming to be put down, screaming for water, and just screaming for the sheer pleasure of it (okay probably not really. But I'm so tired that I'm starting to hallucinate. It feels like he's screaming for fun.).
I'm desperately hoping that tomorrow brings some sleep. We both need it.
I busy myself trying to be entertaining, but even my hugely successful glovey-balloon falls flat. Tough crowd.
At noon, his IV fluids are upped from 40ml/h to 41ml/h. This passes for news around here, because the pumps are brand new (like, this is the first day anyone's used them) and nobody really knows how to work them.
 |
| Ooh. Aah. Shiny newness. |
Around 1:30, Megan arrives, and Aidan rejoices. We talk and catch up and get ready for the Gastric Emptying Study. I snapped a picture of Aidan relaxing - and he looked pretty good. Calm, relaxed, not pukey.
Not half an hour later, as we head down to Nuclear Medicine for the Study, we notice that Aidan's getting very red. He's also getting really cranky and whimpery, and hot.
 |
| Note the Allergy Cheeks starting up. |
The Gastric Emptying Study was traumatic. For me, mostly. I think Aidan was too far out of it to really understand what was happening around him, but basically they strapped him to a table and pushed in Elecare laced with Radioactive tracers. We would then get an hour and a half's worth of imaging to see where the feed goes (and how quickly). This way, we can tell if he's aspirating anything, or if the stomach isn't moving things through quickly enough.
 |
| No energy left to fight his restraints, poor kid |
 |
| Radioactivity? VOM! |
Around 6:15, the pediatrician working with the GI Attending came in to see me, and I complained about the Attending blowing us off. She asks how much of The Plan I'm aware of, and I said that all I knew was the Gastric Emptying Study, which we've now already done. Are we now planless? We're not, she assures me, we're scheduled for an upper endoscopy tomorrow. Um, no. Just no. We're not doing upper only. Not when his disease lives in the lower, and his GI has always done upper and lower together. I warn her that I won't be giving up without a fight - I feel very strongly about also doing lower. She says she'll "take it back to the team." I'm expecting a Battle Royale.
Around 8, Nurse Dayna decides it might be fun to start feeds. I disagree. I explain again that he couldn't even tolerate the 3oz needed for the Gastric Emptying Study. Another 7 ounces seems stupid to me. She eventually agrees to keep him on the IV, and keep him NPO after midnight in case GI agrees to add the lower scope to tomorrow's plan.
We are tired beyond tired, so Aidan and I both try to pass out. It works better for some than for others, for sure.
Around 10:15, I'm startled awake by a new nurse (Daniel?) who calmly explains that Aidan may have blown his IV, but they're calling the IV team to try saving it. The IV team arrives in the form of one tiny lady named Mimi - but who am I to complain - she saved it!
At the same time, Anesthesia stops by to confirm him for Surgery tomorrow (they only know about the upper - grr - we WILL be doing both!). I'm so tired at this point that I'm not even sure whether or not I signed consent. I must have, because he eventually left.
Around 1:30am, Aidan spiked a high fever again, and even with Tylenol, he spent the next 2.5 hours screaming. Screaming to be held, screaming to be put down, screaming for water, and just screaming for the sheer pleasure of it (okay probably not really. But I'm so tired that I'm starting to hallucinate. It feels like he's screaming for fun.).
I'm desperately hoping that tomorrow brings some sleep. We both need it.
My heart just breaks for you and for Aidan. I can't imagine watching my child go through something like this.
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