Day 2 started a bit rockily - IV checks every hour made for a seriously bleary-eyed mama by 8am when we finally called it a morning and introduced ourselves to our Nurse. Erica. Sadly, she recognized us from our last stay. It's one thing to start recognizing nurses - but when they start recognizing you - it's time to stop having a sick baby!
Erica told us that she didn't know when or even if they would be able to fit Aidan into the schedule today for his Tube Surgery. Extremely frustrating, but all we could do was wait to see.
A quick check out the window showed a Shields Family first - a gorgeous view of the ER. This means that we're on the opposite side of the hospital than we normally are - it's so weird to have the room set up "backwards"
The rest of the day was insane:
9am: Another Anesthesia Consult. We talked through the differences between anesthesia and sedation. Because of his extreme level of terror, they think it's best to go whole hog (anesthesia). But they tell me to have hope, and that as he gets older and more cognitively aware, he may start feeling safer and more able to handle what's happening to him without being put to sleep.
10am: Apparently I signed procedure consent? Honestly, I vaguely remember a doctor asking me to sign something, and I signed it.
11:30am: Erica came in to tell us that we would be moving forward with the procedure, and almost immediately, Transport arrived. Aidan wouldn't sit on the stretcher, so I carried him down. While we waited in the PACU (post-anesthesia care unit) for things to get started, Aidan clung to me nervously, and we went through all of his allergies and medical history.
12:00: Aidan went into Surgery. I was told that it would be quick - Ten minutes or so for them to change the tube and quickly treat the granulation tissue.
This was the longest wait EVER. It's always the longest wait ever, but still. This felt insane.
1:30: They finally came out to speak with me about his surgery. He did well, but it took (way) longer than expected. They changed the tube, and downsized to a smaller tube (16Fr 2.0cm instead of 16Fr 2.5cm) - which is great, because we've ALWAYS suspected his GJ pain was due to a poorly sized tube. They treated the tract with silver nitrate to remove the internal granulation tissue. But the scary finding, and the reason for the long surgery time, was that they found an intussusception. Basically, one part of the bowel slipped inside another part, causing an obstruction, which led to lots of pain for Aidan. Intussusception is a medical emergency, and we're extremely lucky that it was found so early and they were able to fix it before there was any necrosis or tissue damage. If they hadn't found it and fixed it so quickly, he could have lost part of his intestine, or worse. Intussusception can be fatal in a matter of days if left untreated.
Aidan woke up hard from the anesthesia, but lots of cuddles from mommy made him feel a lot better.
2:00 - Ready for Transport back up to 5 South. We did not attempt feeds right away - he needed time to recover and rest. He was snoring like a full grown man.
I felt awful leaving him, but I was starving, so a Nursing Student sat with him while I ran down to the cafeteria for some delicious elderly hot dogs.
2:45 - Aidan's IV became sluggish and the IV team was called in to save it. We really couldn't afford to lose the IV, since the other hand was already blown. Success, though - it was saved :)
3:15 - Plan was devised to start feeds at 4:30. We would start at 30ml/h and increase by 5ml/h every 3h until we reach his goal of 65ml/h. As long as all went well, we'd be discharged once he was at 65ml/h and tolerating it well.
4:45 - Feed started at 30ml/h
5:15 - Feed halted. Aidan was in severe pain. The doctors agree that he's not ready for feeds yet, and we will need to watch him carefully for any signs of a repeat intussusception.
7:00 - The pain has continued even without feeds, so we gave Tylenol and agreed not to restart feeds for a few more hours at least. The rest of the evening was quiet and uneventful, except that Aidan demanded to be held pretty much the whole time.
Midnight - Feeds restarted at 30ml/h without fanfare. We will increase slowly per the original plan, and if all goes well, we will go home sometime tomorrow afternoon.
Erica told us that she didn't know when or even if they would be able to fit Aidan into the schedule today for his Tube Surgery. Extremely frustrating, but all we could do was wait to see.
A quick check out the window showed a Shields Family first - a gorgeous view of the ER. This means that we're on the opposite side of the hospital than we normally are - it's so weird to have the room set up "backwards"
The rest of the day was insane:
9am: Another Anesthesia Consult. We talked through the differences between anesthesia and sedation. Because of his extreme level of terror, they think it's best to go whole hog (anesthesia). But they tell me to have hope, and that as he gets older and more cognitively aware, he may start feeling safer and more able to handle what's happening to him without being put to sleep.
10am: Apparently I signed procedure consent? Honestly, I vaguely remember a doctor asking me to sign something, and I signed it.
11:30am: Erica came in to tell us that we would be moving forward with the procedure, and almost immediately, Transport arrived. Aidan wouldn't sit on the stretcher, so I carried him down. While we waited in the PACU (post-anesthesia care unit) for things to get started, Aidan clung to me nervously, and we went through all of his allergies and medical history.
This was the longest wait EVER. It's always the longest wait ever, but still. This felt insane.
1:30: They finally came out to speak with me about his surgery. He did well, but it took (way) longer than expected. They changed the tube, and downsized to a smaller tube (16Fr 2.0cm instead of 16Fr 2.5cm) - which is great, because we've ALWAYS suspected his GJ pain was due to a poorly sized tube. They treated the tract with silver nitrate to remove the internal granulation tissue. But the scary finding, and the reason for the long surgery time, was that they found an intussusception. Basically, one part of the bowel slipped inside another part, causing an obstruction, which led to lots of pain for Aidan. Intussusception is a medical emergency, and we're extremely lucky that it was found so early and they were able to fix it before there was any necrosis or tissue damage. If they hadn't found it and fixed it so quickly, he could have lost part of his intestine, or worse. Intussusception can be fatal in a matter of days if left untreated.
 |
| Looking as sad as I can. |
2:00 - Ready for Transport back up to 5 South. We did not attempt feeds right away - he needed time to recover and rest. He was snoring like a full grown man.
 |
| Wouldn't be so bad if today weren't October SIXTH. |
3:15 - Plan was devised to start feeds at 4:30. We would start at 30ml/h and increase by 5ml/h every 3h until we reach his goal of 65ml/h. As long as all went well, we'd be discharged once he was at 65ml/h and tolerating it well.
4:45 - Feed started at 30ml/h
5:15 - Feed halted. Aidan was in severe pain. The doctors agree that he's not ready for feeds yet, and we will need to watch him carefully for any signs of a repeat intussusception.
7:00 - The pain has continued even without feeds, so we gave Tylenol and agreed not to restart feeds for a few more hours at least. The rest of the evening was quiet and uneventful, except that Aidan demanded to be held pretty much the whole time.
 |
| If you aren't going to hold me, I'll just lay here and pick my nose. |
Midnight - Feeds restarted at 30ml/h without fanfare. We will increase slowly per the original plan, and if all goes well, we will go home sometime tomorrow afternoon.
All I have to say is BOOOOOOOOOO.
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