Rollercoaster Day

Woke up this morning to a baby getting a finger poke.  Amazingly, he barely cried.  And the CMP (what they ordered) was "basically" normal.  A few items better, a few worse but overall about the same.  So no worse for the wear ... amazingly!

But ... no tube! 

Dr. Cuenca (One of the GIs) came in today and calmly (with smiles) said that she has taken this issue all the way to the administrators of the hospital.  Yes, she knew that JCO was here this week ... but this is not right.  She asked Manny what color pen he was holding.  "Red"  .  She then walked out to the nurses station and began to give the third degree to several people on the phone! 

Kaley ... the world's best helper ... still has an amazing attitude and a helpful heart.  Today, she was combing his hair.  What do you think?  What a handsome dude!

12:00 Dr. Cartaya comes in and discusses how he's doing overall ... which is amazingly well.  And leaves.  About 5 minutes later, he pops his head in the door and yells, "We have a tube."  And closes the door!  What?!? Yippee!! 

12:20 they are ready for us to go down. 

Arrive in IR ... not quite ready for us afterall.  No room for him.  But that's OK, we had his wheelchair and some toys. 

Eventually, Alisha came to get us.  There are two options for placing this tube.  1) Anesthesia where they knock him out, the whole sch-bang.  (comes with many risks).  2)  Alisha gives him some mild sedative just to take the edge off and does it with him awake.  I much prefer option 2.  Sometimes I'm not given the choice ... today I was. 

So Alisha takes him away and he cries (much separation anxiety) but I know it won't be long before he gets meds and chills out. 

1 hour and 15 minutes later, she comes out with him.  He's groggy and chill but fine.  As we head up to our room, she tells me it was very difficult to get it in.  Maybe scar tissue.  He has weird turns and twists in his bowel.  And she also thinks that this tube might not be quite long enough either.  This is the first time we're going from a 22 to a 30.  The only other length is a 45 (which she said would "Be out his butt").  But his tube was clearly out of place for a long time she said because the hole from his stomach to his intestine was reclosed. 

So now it's 3:15 pm and we're back in our room.  We're waiting for orders to actually USE the tube.  Seems the orders weren't written to start feeds.  (Not sure why ... if it's oversight or if they purposely wanted to do something else first.) 

I know she wanted to talk to me about using Reglan.  And I'm just not ready to go there yet.  The potential side effects are just too big and possibly permanent.  So I need more time on that. 

I also need to find out what happened with the second tube they were trying to order.  Did it come?  Did they find a new way to get it to us?  What happened?   Must find out ... can NOT do this again. 

....

OK now on to a new subject.  I called the Pulmonologist just now to get the results of the sleep study.    "Basically Normal".  What the heck?  Guess it's great news ... it's just CONFUSING news.  Apparently, the respiratory symptoms were COMPLETELY caused by the GI issues and have basically no bearing or effect on his respiratory system.  Seriously??   He desatted a few times but not too bad or for too long.  Low 80's but never stayed down for more than 5 minutes. 

So don't get me wrong.  This is WONDERFUL news.  It just caught me off guard. It shows his lungs have not been compromised.  And that is PRAISEWORTHY news!

And just for fun, while I was typing this ... he went into respiratory distress - retching, etc.  (And no, they haven't started feeds yet).  Nurses came running from everywhere.  I got it on video as "proof" of what he was doing.  It all only lasted about 3 minutes.  But it sure gets your blood pressure going!

We thought it was all about food in his tummy ... but clearly, it's not.  There's nothing in his tummy.

Over the next hour, he's done this 3 times.  His pulse goes way high, his sats go way low.  He stops breathing.  Now what?

So it's 5:15 and he's napping.  Those retching episodes always leave him exhausted.  (Back last year, they thought these were seizures because he looked so "spent" after.)

His retching has slowed down but it's not over and he still hasn't been fed.  He did NONE the days without the tube in. 

7:30 Dan arrives with the kids and dinner.  What a welcome sight!  The baby is soooo grumpy again.  Yelling "OWIE" and not telling me where.  He's not been like this since his tube came out on Friday.  We sat and discussed our options. They had to leave at 9 to get home to bed as the kids have school tomorrow.  (They usually go to bed at 7pm and it's a 40 minute ride home.) 

9pm Just told the nurse to call again.  Now.  We're stuck in limbo.  He's doing less retching (only one this hour).  They still haven't started the feeds.  They were SUPPOSED to start feeds at 3pm when he came back from the procedure but the formula hadn't arrived from dietary.  So while we were waiting for it, he was doing the horrible retching with desats.  Now the food and pump and bag are all sitting here ready to go but without the Okey Dokey to do it.  He's still on the TPN like he's been on since Saturday.  But I'm am about to lose it here.

9:20 Nurse came in and said the doc said to start the feeds on half rate and we'll go from there.  At least it's progress.  I'm just supposed to notify the nurse if/when he retches. 

Tired Mama.  Grumpy Baby.  Thankful for happy big sister.