Boston Summary

Surprise!  We’re in the hospital again.  This blog entry will be a catch up one from the last entry until now. 

For those who follow us on Facebook, you already know all this.  But I just looked back on the blog and realized I never did update the blog about Boston.  I wrote it, just never sent it.  Then blogger ate it.

So … Boston Summary:  September 17, Discharge hospital 3am, head to airport, stopped by TSA for a substance found on Manny, barely made the plane that departed 6am. Too many medical machines and supplies.  VERY hard.  Manny needed oxygen.  Had it because of a dear friend.  No straight flight, had a layover.  Wrote the blog entry on the plane about “No leave me”.  Stewardess saw me bawling. 

Landed in Boston … drove via taxi to hospital.  Cab driver cheated me. I blessed him with encouraging, affirming words.  Got to the doctor (another long story but we were there at 1pm, told to come back at 2 so we did. Turns out we were told wrong and we almost missed the doctor completely).  Admitted. Great room!

They were worried about his breathing/lung status.  They wanted him to go into ICU and I talked them out of it.  They had monitors in his room so I felt safe.  He needed oxygen but nothing else.  So it was the right call. 

Procedure went well.  They were worried about general anesthesia so they did sedation and apparently he was cracking everyone up during it!  He even tickled the very straight laced doctor. 

They did an EGD and colonscopy.  The initial assessment was all was normal except some inflammation of the small bowel.  They removed the GJ tube and it was disintegrating (explains the foul smell I’d been asking about for a while … I’d even asked if he needed to have that replaced. ) They also placed catheters for the test the next day. 

Sitting in taxi, waiting for car seat.

 

On way to EGD/Conoloscopy

 

Waiting for the procedure ... feeling happy and silly.  Best he'd felt. 

 

Right after the procedures, needed a bit of oxygen due to the sedation.

 

 

All day Sept 19 was the manometry (motility) testing.  Very cool.  Looks like an EEG wavepattern.  They administered 3 drugs, one at a time.  The first two were fine.  The third one did something wacko for him and it stimulated the horrible retching that he used to do when he was fed via tube.  They caught it.  They stopped the test and had the doctor come down immediately. 

Pictures of the Motility Study ... nothing hurt.

 

They packed us up and sent us home.  That sounds so easy, doesn’t it?  We were supposed to be out of there by 3pm for a 5:40 flight (the last of the day).  And we had a TPN bag in the med fridge for the flight home.  Wouldn’t you know it?  They lost it! Just a fluke. They got us a bag of fluids for the trip, popped in a Gtube and we got in a taxi at 4pm.  He promised to get us there in time.  He did.

They had a person there to escort us through the airport.  Good thing we did or we would have NEVER made it!  There was another strange thing at security … not with us but just ahead of us.  And once it reopened, the escort put us at the FRONT of the line!  Then we got on the plane just in time. 

On plane home, cracking fellow passengers up!  The machine in his lap is the pulse ox. 
We use it to determine when he needs oxygen and his heart rate. 

 

More oxygen needed on the flights home.  Long. Hard trip.  I got sick.  Flu type symptoms plus vertigo.  My parents met me at the Tampa airport to drive me home (it was 1:30am).  Phew. 

The next day went to the Pulmonologist for a consult.  Gave us a new med to dry up his secretions as needed. 

Then we just tried to lay low and recover a bit.  (Thus the low and the neglect of the blog). 

The rest of the story is being written on the blog right now!  Stay tuned.