Wednesday, October 10, 2012

A Scary, Eventful Day

Yes, it has been quite the eventful day - and not in a good way.  I will start by saying that we still have no answers as to what is going on.

This morning it was just more of what I described yesterday.  Within a couple hours, she was having problems holding her oxygen level and needed oxygen.  It was still a little low and her heart rate was also high.  No fever to start the day.  Within a few hours, she began developing weird bruises just out of nowhere.  All the while, she was extremely lethargic.

I called for the nurse.  It wasn't her own who came in, but that nurse got Peyton's nurse.  She called the doctor.  The doctor came and he left and came back.  Then they did a MET call (think emergency response type of call minus crash carts and other scary things).  Soon we had 15-20 nurses, doctors, respiratory therapists descend onto her room and at any point in time there were 4-6 people immediately at her bedside.  Respiratory began doing treatments.  They had an ambu-bag ready.  She wasn't ventilating well.  Her coloring was poor.  Her respiratory status was vastly different from where it was not long before.

It wasn't scary in the "she stopped breathing" sense that we had a few weeks back.  But it was pretty darned scary having that many people come in all at once and take over the room.  I was standing towards the back and there was a nurse in the room who had just come in to talk with me (she handles pain management and palliative stuff). She just happened to be in the room when it all happened, so she was an incredible support during everything.  One doctor came in and asked questions that I couldn't even answer because I was too emotional.  She answered for me.  

Long story short, after a debate between sending her to the PICU vs the PICU step down unit, the PICU won out and we were sent there.  It's an open unit with curtains between beds.  It's loud.  Lots of activity.  Lots of beeping equipment.  Alarms going off.  Just busy.  Chairs but nowhere to sleep in here.  No food or drinks allowed.

Prior to the events I described, she had been sent for a stat shunt series.  She has a shunt because of hydrocephalus.  There was some concern over everything being shunt related.  The series is basically a set of regular xrays to look at the shunt and it's tubing that goes into her abdomen.  It was shortly after returning to the room that everything happened.

A stat head CT was also ordered.  She had that a while after being brought up to the PICU.  It was well-timed as Ron and Moira had arrived and he had food for me.  I wasn't allowed to go for the CT so I sat with them and waited.  Everything looked ok on all that imaging, but they ordered for her shunt to be tapped.  I guess you could say it' like a spinal tap but they tap into her shunt in her head.  They are able to check flow and pressure when they do this, so all that looked good.  They took samples of fluid.  So far the numbers are all looking good with nothing pointing towards a bacterial meningitis.  

That said...we still don't have a clue what's going on.  Everything keeps coming back negative.

Please keep Peyton in your prayers.  Today was pretty scary.

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