Wednesday, December 29, 2010

"Good Morning"

My alarm clock this morning was the ENT Doctors voice...."Good Morning!"  It was about 8 in the morning and not the way I wanted to get up.  I was in a good place maybe even dreaming and she ruined it all.  I think I have gotten over it now that I have a coffee in one hand and my computer in the other.  Anyone who knows me well, knows I like the morning very much :)
(BTW...I think I slept late because I was up late on the computer and eating junk food!)
So here we go....
Today plans so far:  ENT decided that they would come back this afternoon to do the scope for the 3rd time.  He may also get a trip to the operating room tomorrow if things are not better tonight.  They would just need to get in there for a better look....nothing too invasive.  They just feel as if the swelling should be down by now and may need a deeper look. Neurology is working on his med levels...although this new med does not go out with the dialysis, it's taking a bit to get the level to a good one.  The level is on the low side so we need to get it up as fast as possible.  The Renal Doctors say that things are going well, their concerns for the morning are the low seizure level and they want him to get upstairs as soon as possible so he can eat and drink!  I think they may be Mark's favorite people at the moment!!!  When I had mentioned to the Renal team about the possible trip to the OR tomorrow with ENT, they did not seem happy.  So we will see if they intervene on that one.  The only thing we are waiting on at this point is the ICU Doctors to do their rounds.  They are the overall care team and in charge of the mask. When they get here we will see where that stands.  
This afternoon we can expect the scope and dialysis a bit later....If we hold off on the dialysis it will give them a chance to get the seizure meds into him two more times before treatment time.
So that was the plan but as I type they just came into to set up dialysis...The nurse said there was a change in the schedule, but reassures me things will be fine with his levels.
Mark did wake up this morning and of course ask for water.  I said "You are doing great, but we need to wait."  He said "I have been waiting for like 20 years."  He is a bit strong willed.  I think he could make the Guinness Book of World Records, for the most times using the word water in 48 hours....Can someone look into that for me?  


He has won many medals and trophies before...Why not a plaque from the Guinness Book?

1 comment:

  1. Hi Emily, Chris and My favorite boy in the hallways of Page Hilltop School, I am thinking of all of you and praying for an intervention. God has great plans for Mark. He is such a happy, personable little boy. I have had the pleasure of watching him grow over the years. What a joy. I feel your pain and am saddened that you are all going thru this. Why did Christmas miss you? Who would want to spend Christmas in the hospital not feeling well and trying hard to pretend it's fun when it's not...the plan is keep the tree up, rewrap gifts 8) and find someone with a real beard to come to the house to play Santa. It needs to be Mark's day. God Bless you all and give you strength thru all of this.
    Jan France-Gr.1

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