No Tube Yet! aaaaauuuugggghhhh

We were in hopes that today would be the day we could have our tube and go home.  That was Plan A.  But alas, it was not to be.  So we wait again.  The tube SHOULD be here by tonight.  If it is, then we'll be the first one to go to surgery tomorrow.  And then a few hours to make sure it's working.  And then home.  That's the plan anyway.  Plan B. 

None of the doctors want to come in here today.  Normally, we see the Hospitalist and the GI.  But today, they both sent in their assistants.  (Even though they were just outside.)  I think they didn't want to be the ones to tell us the bad news.  (Our nurse told us first thing this morning.)  And they are all fit to be tied! 

So it's been clarified what happened.  The hospital is working their butts off Friday afternoon, all weekend and even today to locate a tube.  The DME that carries them is closed all weekend.  Seriously.  That's it.  So the hospital assured me they made the DME send two.  They are bound and determined that this will NOT happen again!  5 day hospital stay for a 45 minute outpatient procedure is just insane. 

The nurse told me that everyone is asking "How's the Mom taking this?"  And of course, they're all in shock that I'm making less of a stink about it than the Doctors are.  They're TICKED.  I'd rather them do the yelling and let me be the nice one.  (Yelling doesn't help anyway!)  The staff that know me know that I'm as calm and cool as they come. 

So while we wait, we're just trying to keep ourselves entertained. 

Here are a few things we're doing: 

This is what we call a "hand bath".  We played on the floor for about 2 hours.  Warm water in the basin.  Add floatable toys.  Add animals.  Add bubbles.  Splash.   Soak Mama.  Repeat.  He pitched a huge fit when it was over because he wanted to keep playing.  Guess you could say it was a "hit".  But we eventually had to get up, Kaley and I could only sit on the floor curled up for so long before our legs cramped up.  We have to sit behind him because he can ALMOST sit independently, but not quite. 

This is a view of me holding him and Kaley helping hold the bubble wand.  He takes the BIGGEST breaths in order to do this.  But he's a pro now at bubble blowing.  We do it to help him inhale and exhale.  He can do this forever too!

Kaley also put him in the bed surrounded by pillows and kept making the bed go up and down.  It was a great arm workout for Kaley and a fun ride for Manny. 

The rest of the time?  We've been writing, doing letters, watching DVDs (especially Baby Einstein), playing on his laptop, playing with cars and animals.  I came quite prepared.  I knew we'd have to be her until today so I was all set. 

11am  We get to leave the room!  OK it's only for a procedure, but hey ... it's an adventure out of these 4 walls.  We go to get an ultrasound of his liver, gall bladder and pancreas.  (I expect them to all be normal.)  But they're checking anyway.  Some of his liver enzymes are always "off".  Not sure why. 

And while we're talking blood tests, his amylase and lipase came back normal.  His WBC is still quite high and several of his labs are "off".  Much of it is about muscle wasting though if I'm reading and interpreting them correctly.  (sigh) 

2pm  So I smell this "odd" smell and decide to investigate.  Sure enough, his tube area is getting infected.  We can't tell if it's from the foley or from the tegaderm.  There's redness and I'm keeping an eye on it for now.  But I know from his past that he can go from fine to septic in no time.  (Long time followers will likely remember THAT!)  So trust me, I'm "on it" quickly when I see that. 

Rest of the day ... pretty unadventurous. 

6pm Manny falls asleep and no way to awaken him.  It's tooooo early.  But then again, if we have to get up early for the procedure tomorrow maybe it will work out.  But what if he wakes up at say 10pm when I'm ready to crash?

7:30, Mom shows up with a Whopper! Yum.  Thanks Mom.  I know it was a very long day and it just added to your long day to stop here.  But it certainly was nice to chat. 

8pm, The night nurse shows up and says she isn't positive if the tube has arrived or not.  Darnit.  It was supposed to be here before now and should have been in the chart.  Trust me, many, many people in the hospital are aware of our situation.  (And not due to me, I've been stuck in here trying to keep a hungry baby happy.)  It's not a good sign.  But there's still hope.  I'll feel better when I hear the words, "It is here."

Ironically the accrediting board for the hospital is here this week (starting today) and they're all a bit on edge, crossing every t and dotting every i.  Ironically, WE are something that has proven to be a MAJOR systems failure.  I think they all want to keep me happy and keep JCO away from me. 

9pm finally lay the baby down in his crib.  He'd been in my arms this whole time.  I knew laying him down could wake him up but I also knew I couldn't hold him (or my bladder) all night.  So it had to be done.  I was successful!  It worked!! 

And JUST as I was walking away, the Respiratory therapist came in, knocking LOUDLY, talking LOUDLY.  She's one I have had before and do not enjoy her.  We get into some pretty interesting conversations but tonight it's not going to work and there's NO way she could just come in, do the breathing treatment quietly and leave.  So I say (kindly), we would like to refuse all breathing treatments for the night.  Thank you. 

Guess it hurt her feelings because later, the nurse had to tell me "The RT felt HORRIBLE..." blah blah blah.  So I said, "It's no big deal, everything's fine. I am just trying to achieve some normalcy for this baby." 

But between all the interruptions, the beeps, the loud people ... it's now almost 10pm and guess who is WIDE AWAKE?  (One hint:  NOT ME!) 

Oh, and the nurse informed me they need new labs in the morning. 5am! You have gotta be kidding me.  We talked about him being a difficult stick.  Hoping a bullet will be enough and if so, they can do a finger poke.  If she does it right, she can get it to drip and not hemolyze.  And then HOPEFULLY off to the procedure. 

This is Plan B. 

Hoping there will not be a Plan C.