Oct 5, 2011

Already been here 5 days ... can you believe it?

Not much happening today. 

Dr. Lawrence (GI) came in to check on Manny's night.  He's stable but there are definite noticeable differences of Manny ON food and Manny OFF food. 

These are symptoms that were here when we arrived, disappeared when the food was stopped and returned when the food was resumed. 

Excessive sweating (especially the head), increased saliva (enough that he is pooling and trying not to aspirate again), choking, crackling/wheezing in the chest, increased heart rate, increased respiratory rate, mouth breathing.  Now none of this is dramatic yet... but it's certainly noticeable. 

We had a visit from some of the Gator athletes.  Swimmer, volleyball player, soccer player, soft ball player.  They couldn't come in the room so they stood in the hallway and we brought Manny to the door in the wheelchair.  Manny was NOT happy.  I think he thought they were going to do poking or prodding or something who knows.  Then I told him that they play ball and he said, "PLAY BALL ... OHhhhhhh".  And he started "dancing" in his chair.  Very excited.  They gave us a poster (a volleyball one since I played volleyball in college too). 

Later in the day this lady, Margaret, comes in and asks if I know Elsa.  (I've mentioned her many times before ... she and her hubby Rich always bring us Balloons and Fruit when we're in the hospital!)  Anyway a mutual friend of theirs called and asked if they could bring their therapy dogs to visit us. 

So "Bud" and "Weiser" (HUGE golden retrievers) were at our door.  Now Manny couldn't touch them and vice versa.  But they got to see each other.  They were panting quite heavily and it was hilarious when Manny would imitate them! hee hee heee

About 4pm, Dr. Lawrence came in and was sooooo excited ... they have a plan!   They'll do some higher calorie formula, some IV and some pedialyte.  They'll also do some basic blood tests while they're at it (since he has to get a new IV anyway).  I'll be interested to see if the pedialyte has the same effect as the formula... so we'll know tonight. 

Once we find a combo that doesn't stress him out, we can go home.  I'm sure we'll have to tweak things along the way.  I love that this doc is concerned that he's stressed at all by the food.  Manny should be the same ON and OFF food.  And right now, that's not the case.  If the volume issue can fix things, that's easy.  If not, we move on to tougher things like TPN or Gastric Stimulator.  We also still might need to have that salivary surgery since airway is the most important.  We'll see. 

Listening to music on Kaley's PSP
So at 8pm the night nurse came in to take some basic blood tests (they hadn't done that yet this trip) and reinsert the IV.  It only took 5 nurses and 3 attempts before they got it!  He was amazing. 

About 10pm, I noticed the slightest amount of formula in his stomach.  How ironic because we're taking him off formula and switching him to pedialyte over night anyway.  So ... since it's clear, not sure how I'll tell it's saliva vs. pedialyte. 

1 comment:

  1. Beth, Can they use a colored Pedialyte so you may be able to tell easier if it is backing up?
    Also, if he does not tolerate the pedialyte, check his formula's corn content as the manufacturer confitmrd the source of the dextrose in Pedialyte to be corn. While the actual rate of corn allergy is rare, intolerance is more common and has been known to create like symptoms.
    Praying for each of you, Marae