Tube out? In? What is going on?

How do I say this? 

We're in the hospital again. 

You know that GJ tube we waited 4 1/2 days for?  By Sunday, it was clearly out of place.  I pretended it was not the case but I knew it was.  By Monday morning, I put a call into the GI.  By 1pm, they called me back.  2:30 headed to the Hospital.  3:30 appointment.  4:45 finally see the doc.  5:30 admit papers in hand.  7:00 headed to our room.  (Change of shift, naturally.)  11pm, Manny finally asleep.  Kaley is with me again.  (My trooper!) 

Manny?  He handled it beautifully!  He's in a great mood.  The IV team did his IV.  (Only took 3 sticks.)  And fluids were finally in at 9:30pm ... so only about 8 hours without fluids. 

Dora balloon!

The plan?  Wait for another tube.  NO, I am not joking.  I would NOT joke about something like this.  SO hopefully they got 2 when they ordered the last one.  This time, the GI wants to put it in himself.  He wants to see if there is something they've been doing wrong or something anatomically going on that would cause it to malfunction so quickly.  (These are supposed to last about 6-9 months and this will be the 5th in 6 months.) 

We also discussed doing some tests... not sure what all they will be but we'll see tomorrow. 

Also discussed that it could be the retching that causes the tube to go out of place.  So what is causing the retching?  He felt it's neurological (based on symptoms) and not GI that causes the retching.  And if that is the case, the only thing that can be done is to do a "major surgery". 

I have fellow tube moms who feel that he needs a separate J and G tube.  (Means 2 holes on his body.) But no way for this to happen again.  And these tubes can be reinserted at home, not at the hospital, etc.  All sounds great to me. 

For some reason, they don't want to do a "straight j" placement, they would only want to do the Roux-en-Y procedure and that is MAJOR surgery he said.  So tomorrow, I have a surgery consult to discuss.  I'm not clear on why the "staight j" would not be an appropriate surgery. 

But either way ... I hate these choices.  They all stink if you ask me.  I'd like my baby to wake up tomorrow asking for a cheeseburger and we walk out of here. 

The night was uneventful.  (Love having a nurse and a nursing assistant ... no machines beeped all night!  They were on top of things.)

7am they came in to take us to Radiology for a small bowel series.  Barium in the tube and watch it (via xray) go out.  The test came back Normal.  The tube was in place. 

NOT the news any of us expected!  Why?  Because how does milk end up in his stomach (in large amounts) if the tube is in place?  Very, very strange mystery.  AND why is he continuing to retch enough to cause respiratory distress?

waiting for a clean gown... saying "Cheese" and playing with Diego (his fav)

So I sit here at 12:30pm and I am questioning my sanity.  I KNOW there was tons of milk in the tube.  How do I know?  I collected it and have it with me!  And I KNOW he has these desats due to retching.  How do I know?  Because I have video of several of the episodes. 

But as I sit here, I think my docs know me well enough to know I didn't make either of these up ... but as a sane person, I also know they've GOT to be considering that possibility or that I messed up or made a mistake. 

Meanwhile, he hasn't retched today.  His tube is in place.  Maybe I just take that news as great news and go home.  Part of me wants to do that, the easy thing.  Just bury my head and pretend that there's nothing wrong.  And yet, I KNOW that later today or tonight or tomorrow or soon, we'll be right back where we started... with milk in the wrong place and retching. 

But I also question how much "fight" I have left in me!  And if this is the time to PUSH, or just go home and regather myself. 

Up until the MRSA came back negative, he had to wear the mask when he left the room to go get his IV. 
He is not a fan of the mask.

So while I'm sitting on the ground playing in the water bucket with Manny, I hear a familiar voice in the hallway.  Dr. Cartaya.  I'd asked to be on his service but the GI felt he didn't need it.  I opened the door and he saw us and was in shock that we were back... again!  I ran a few things by him.  He had the same questions/concerns I did.  Seems the Roux-en-Y j tube placement is very aggressive and he's wondering why that would be the next step versus the simple straight jtube placement.  (Me too.)  He also wondered why the retching and what could be done (his theory is nothing).  And why the heck the milk would be in the wrong place.  (He was as confused as everyone else.)  Seems Manny keeps everyone guessing!

4pm, Mom and Dad came to help.  I had previously scheduled to be on a live TV show to promote cleft awareness ... and the set is at home (45 minutes away).  So Kaley stayed here, they stayed and watched Manny.  I booked it home, did my hair and makeup, ironed a shirt, ironed Zoe's shirt and did her hair, and with 1 minute to spare, got sitting for the interview.  They say it went well (Zoe wouldn't talk, little stinker).  But the live streaming will be available as early as Wednesday ... will post the link if it's not too horrible. 

8:30, back to hospital.  Manny is asleep in my Mom's arms.  Apparently, a surgical assistant came by very late this evening.  Not sure what all was discussed as Mom/Dad don't have all the questions to ask him, etc.  So apparently, consult will come by again tomorrow, trying to schedule it when the Neuro is here. 

I have no clue the plan.  I just know that when he retches ... it's bad.  It's scary.  It's life threatening.  Some moments he's fine ... even a whole day here and there.  But even one could prove to be "too much".  I feel like we're missing a critical piece of the puzzle. 

But for now, little bit is sleeping.  Milk is going the right direction.  No retching.  So all in all, it's a great night.