Day 6 -
Just after midnight, Aidan was taken off Elecare feeds and placed on IV feeds. Our nurse until 7am was Kelly, and she was really sweet to Aidan. Most everyone has been really sweet to him, even though he's a pretty atrocious patient. Nights are so hard because I stay up until they're done messing with him (for the most part), which is around midnight, but then I try to rush to sleep so I can get up and work in the morning. It will be glorious to get through this week and SLEEP this weekend. Please cooperate, weekend.
The overnight hours were more or less uneventful, minus one or two wakeups for IV checks and vitals. Aidan is pretty spent so he's getting back to sleep pretty easily right now. The day started around seven when Megan got here and the nurses started getting Aidan's vitals recorded and getting him prepped for his procedure.
8:30: we got word that Aidan would be going in for surgery early. 9am!
8:40: we were told that IR is refusing to do the procedure with Versed. They are requiring more sedation. But anesthesia doesn't feel comfortable putting him under. Soooo, now we wait.
8:50" Our Nurse (Heather) is walking us down to Sedation herself, to see what's what.
9:00: Sedation examines Aidan and declares that he's too slimy for any sedation beyond Versed.
9:30: Versed and Tylenol are given to a 100% asleep Aidan, and some numbing jelly is put onto his stoma in case it needs to be dilated.
10:00: Off he goes to surgery. We are assured it will take "2.5 seconds"
11:00: Longest 2.5 seconds EVER
11:15: He's back! He woke up halfway through and apparently seriously disliked his nurse's singing.
So we're the proud new owners of a MIC-KEY Low Profile Transgastric-Jejunal Feeding Tube. We'll go ahead and call it a GJ. I don't know why they went with the MIC instead of the AMT - I've heard really good things about AMT's new GJ product (GJet) but I've also heard that it's not widely available.
The rest of the day was really just hanging out, napping, watching how he tolerated feeds, and waiting to see what would happen. The highlight was that Grandma Pat and Grandpa Paul came to visit. - it's a preposterously long drive for them so we really appreciated that they came!
Day 7 - I had to wake up early and leave my little man in the hospital - AGAIN. I *hate* doing that, and it always makes me question my priorities, but in this case it was the right thing to do - he's doing fine, I need to be at work, and the plan was to return after work to discharge him. Once again, he refused to be clothed all day. Mommy's little nudist.
The day passed without much drama - he's tolerating his feeds pretty well except that he has bad diarrhea and it's blistering his skin. Weight is at 11kg. 24.2lb. Moo!
I got back to CHOP around 5pm and spoke with his doctors and FINALLY signed his discharge paperwork. WOOHOO! I wasn't even done packing up the room before Aidan was out the door.
So we're home. Finally home! We'll be returning to CHOP @ Exton on Friday 4/5 to consult with GI and hopefully to establish a Scope date so we can plan how to go forward with the formula. Aidan is on feeds 24h per day right now, but over the next several days we'll be looking to step him up to a 20h plan, and then an 18 hour plan. I just need to figure out what makes sense in terms of when to have him on feeds and when to have him off.
I'll keep you all posted after our visit to Dr. L on Friday! Thank you all so much for your support this past week (and always!). Aidan is a lucky little boy to have so much love in his life!
Just after midnight, Aidan was taken off Elecare feeds and placed on IV feeds. Our nurse until 7am was Kelly, and she was really sweet to Aidan. Most everyone has been really sweet to him, even though he's a pretty atrocious patient. Nights are so hard because I stay up until they're done messing with him (for the most part), which is around midnight, but then I try to rush to sleep so I can get up and work in the morning. It will be glorious to get through this week and SLEEP this weekend. Please cooperate, weekend.
The overnight hours were more or less uneventful, minus one or two wakeups for IV checks and vitals. Aidan is pretty spent so he's getting back to sleep pretty easily right now. The day started around seven when Megan got here and the nurses started getting Aidan's vitals recorded and getting him prepped for his procedure.
8:40: we were told that IR is refusing to do the procedure with Versed. They are requiring more sedation. But anesthesia doesn't feel comfortable putting him under. Soooo, now we wait.
8:50" Our Nurse (Heather) is walking us down to Sedation herself, to see what's what.
9:00: Sedation examines Aidan and declares that he's too slimy for any sedation beyond Versed.
9:30: Versed and Tylenol are given to a 100% asleep Aidan, and some numbing jelly is put onto his stoma in case it needs to be dilated.
10:00: Off he goes to surgery. We are assured it will take "2.5 seconds"
11:00: Longest 2.5 seconds EVER
11:15: He's back! He woke up halfway through and apparently seriously disliked his nurse's singing.
So we're the proud new owners of a MIC-KEY Low Profile Transgastric-Jejunal Feeding Tube. We'll go ahead and call it a GJ. I don't know why they went with the MIC instead of the AMT - I've heard really good things about AMT's new GJ product (GJet) but I've also heard that it's not widely available.
The rest of the day was really just hanging out, napping, watching how he tolerated feeds, and waiting to see what would happen. The highlight was that Grandma Pat and Grandpa Paul came to visit. - it's a preposterously long drive for them so we really appreciated that they came!
Day 7 - I had to wake up early and leave my little man in the hospital - AGAIN. I *hate* doing that, and it always makes me question my priorities, but in this case it was the right thing to do - he's doing fine, I need to be at work, and the plan was to return after work to discharge him. Once again, he refused to be clothed all day. Mommy's little nudist.
The day passed without much drama - he's tolerating his feeds pretty well except that he has bad diarrhea and it's blistering his skin. Weight is at 11kg. 24.2lb. Moo!
 |
| I hate how exhausted he looks here. He's so ready to go home... |
I got back to CHOP around 5pm and spoke with his doctors and FINALLY signed his discharge paperwork. WOOHOO! I wasn't even done packing up the room before Aidan was out the door.
 |
| Smell ya later, CHOP! |
So we're home. Finally home! We'll be returning to CHOP @ Exton on Friday 4/5 to consult with GI and hopefully to establish a Scope date so we can plan how to go forward with the formula. Aidan is on feeds 24h per day right now, but over the next several days we'll be looking to step him up to a 20h plan, and then an 18 hour plan. I just need to figure out what makes sense in terms of when to have him on feeds and when to have him off.
I'll keep you all posted after our visit to Dr. L on Friday! Thank you all so much for your support this past week (and always!). Aidan is a lucky little boy to have so much love in his life!
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