left hand meet right hand

Yesterday was an incredibly frustrating day. The net result is that we will wait a few months for Jules to have his g-tube and he will have to stay until Monday to be discharged. All this because Jules was *never* a good candidate for a g-tube surgery but his attending pulmonogist and the GI docs in charge of the surgery never bothered to talk to anasthesiology or surgery until 10 minutes before his now aborted surgery. A simple conversation AT ANY TIME in the last 2 weeks would have avoided all of this nonsense.

This will give you insight into why hospitals suck. Why we waste money on keeping kids in hosptials. Why simple project management and FOR HEAVENS SAKE there should be FREAKING check-list for EVERY surgery.

• Wednesday 2/25 3pm "Discharge Planning Meeting": I say "put on your thinking caps what else needs to be on the discharge list". Complete blank stares from the nurses and doctors around the room. Pulmonologist DoctorA humors me and goes through body systems. List now has 10 items. (NB: No swallow study, no g-tube on list). Date of discharge Thurday 3/5.
• Tuesday 3/2 7:30pm: Pulmonologist DoctorB says to me have you thought about a g-tube. He's going to need it at six months with 3/4 probability. I ask him about the risk of the surgery, especially about the risk of anesthesia and the fact that he'd have to be intubated. There'd be risk that he couldn't be extubated (take tube out for breathing)
• Wednesday 3/3 10am: Equipment to go home like O2 starts arriving. Trainers come to teach us how to use it.
• Wednesday 3/3 12:30pm: Joy and I talk it through and decide to get the g-tube. All home preparations are put on hold.
  
• Thursday 3/4 9:00am: Nurse calls to tell me that we're on for today for g-tube surgery.
• Thursday 3/4 9:30am: GI Fellow (typical initial g-tube is a PEG inserted with the aid of a scope down Julian's throat, so GI takes the lead) visits and says Jules is a good candidate, he's over 4kg. I ask if there are any anasthesia concerns and when would anasthesia come to see us.
• Thursday 3/4 9:45am: Jules is NPO -- no food. And has to be that way for 6 hours. Actually the GI fellow said 4 hours, but she was wrong it was actually 6 hours, per anasthesia.
• Thursday 3/4 3:00pm: We carry Jules up to the pre-op room.
• Thursday 3/4 3:30pm: GI docs visit again to check on os.
• Thursday 3/4 4:00pm: Anasthesiologist comes in after 30 minutes of reviewing chart. Asks questions that should be in the chart (like the fact that his RVH was resolved). Then says we have 3 choices: wait for surgery for 2+ months, extubate in PICU (equivalent of NICU for older kids), or extubate immediately. I told her to talk to Pulmonologist DoctorB. She pages and waits.
• Thursday 3/4 4:10pm: Overheard in the hallway (the surgeon to Anasthesiologist) "Are we doing this or not?"
• Thursday 3/4 4:45: Joy and I call neonatologist friend to ask advice.
• Thursday 3/4 4:50: Surgeon comes in and says a) he wouldn't do the surgery and b) shows os the "belly hose" that is much bigger than his "nose hose"
• Thursday 3/4 5:00: Anasthesiologist and Pulmonogist Doctor B chat.
• Thursday 3/4 5:10: Joy and I call off the surgery.
• Thursday 3/4 5:45: Jules gets some food again.