Some smiles...

If you follow Max's facebook page, or have been watching the updates on the sidebar of this page, you know where we are now.

Yesterday afternoon, Max got moved back to the PICU.  Not because he was more sick, but because he is simply too complicated and too high of needs for one nurse on the floor to handle when he is so involved.   With all the specialties, and medicines, he was constantly being messed with, and orders being changed to the point that the nursing staff couldn't keep up, and he got behind on medicines and IV fluids.

So, we moved back to the one to one nursing in the PICU.  Max also had a CT Scan done last night.  It was done to see if there were any more blockages in his intestines that was causing the vomiting and excessive drainage from his stomach through the G-Tube and NG-Tube set to suction.  The CT Scan results showed that there is a little fluid in his stomach area from the surgery itself, and nothing more.

What this means is, we're not quite sure why he's still been having fevers, and why exactly he's not been able to eat.

Early this morning, he decided he didn't want the NG tube in his nose and throat anymore, so he got the sock off of his hand and pulled the tube out while Daddy was asleep and the nurse was in his neighbor's room.  Max typically needs to wear socks on his hands while he's inpatient because, although he can't grasp a toy or pencil, he's incredibly accurate about pulling out tubes!!

The team decided to watch and see if he could tolerate his own fluids without getting sick before putting the tube back in.  It's 4:30, and he's done well without the suctioning NG Tube.  Surgery has signed off on his care to an extent, because the job they did was a success and he has so many other specialties picking up their parts now.

GI has entered into the picture, in order to get him eating again.  The plan as of right now is to clamp his gtube and see if he can keep his own fluids in.  And to start him on a couple of acid reducing medicines and anti-nausea medicine to give him the best chance of tolerating a sugary water solution he takes for his "Sick Days" with Metabolics called Polycose.

If he tolerates that, we'll work towards actual food.  If he doesn't...well that's another issue, that we'll have to figure out.  But, we're just hoping it will be that he's ready to start eating in the next couple of days, and his bowels are starting to wake up from their long Summer's nap.

And because we all need to see some smiling Max pictures, here are a few I've caught when he's awake.  He's generally been smiling when he's awake, unless he's had a fever or getting sick.


(Steve holding Max...what a giant boy he is!)


(Getting a visit from Arthur, a Prescription Pet)


(Happy to see Abbey)


(After getting the PICC line placed and the HUGE NG tube inserted)


(Cousin Addie having Curious George give Max kisses to feel all better)


(nanananananananananaaaaaaaMaxMan!!!  An awesome quilt from "Aunty Rachoo and My Grandma"...aka Uncle Dan's mom, Pam, and sister, Rachel, who Addie calls Aunty Rachoo and My Grandma.)


(Max today doing his Yoga poses)


(We got Max to sit up for 30 minutes today for the first time in 13 days.)

We will see how the evening goes, and then the plan after the care conference tomorrow.  The care conference will get all of his providers into one room at the same time to talk about the plan of care going forward.   Here's hoping for more smiles, less fevers, and getting things moving from top to bottom inside his abdomen!