Christmas

Oh, please, let us get through this.  Let him wake up and see the presents we got him.  Let him show us he is still with us.  I want my baby to talk to me again.  He is so strong, he is still holding on to this life.  I love him so much.  This is not fucking fair.

Quick Update

I wrote this to my care team at Cincinnati Children's.  It got a bit long but I thought it might do as an update on Jr.  Little bugger isn't going anywhere and he is keeping us busy! I jsut cut and pasted this from the email.

Hello all,

Sorry i did not get back to you as soon as i liked.  Here is Junior's current condition in more detail. 

His biggest issue right now still is his secretions. It has caused sudden drops in his pulseox that required some jostling to make him cough.  We are doing suction with a catheter every 1-2 days.  I am giving nebulizer treatments with Xaponex 2-4 times a day.  He is still watching Dora and Diego with his good eye.  It is very bloodshot but he is still actively using it.  We have suspended using the GenTeal drops as they seem to irritate lately and are using LiquiTears a few times a day. 

We are managing pain on an as needed basis with Tylenol, morphine, dilaudid, and Prilosec.  It is still difficult to recognize if he is in pain.  Just today though it seems that coughing is causing pain.  Otherwise, high heart rate and signs of agitation usually are the only indicators of pain.

Now for the big news, we are going to Disney on Wednesday to the Give Kids the World Village through the Make a Wish Foundation.  Dr. Hudspeth at MUSC was a huge advocate for us and things were rushed through very quickly.  It is a seven hour drive from Charleston and we are preparing like crazy here.  Mollie our most awesome hospice nurse is a great help in this.

So anyway, i attached the labs from Thursday, they will be drawn again on Monday.  Please contact me or Mollie Huskey if you have or need more info.  I miss you all and i promise i know the situation that we are in right now and coping the best we can.

Ivie