Thursday, July 26, 2012

Straight From Steve 3

Good evening everyone, I have finally had a chance to get to a computer and update all of you on today’s events.  I am sorry, but I think it might be a long update tonight as it has been a trying date for Liam and all involved.  As you already know, this morning at 8am we had a meeting with all of the powers to be here at Lebonheur and as I explained to the group before we parted ways, an hour and 45 minutes, later I am more confused, pissed off and disappointed in all of them than I was before the meeting started.

The meeting started out with the genetics group trying to explain to me the basics of DNA and how it works.  I allowed them to speak for 15 minutes, before I had to interrupt them and school them on a few things and when that conversation was done between them and I, the head of the Genetics made the comment that she had no idea that I was as versed in the situation as I am and that she was amazed at all of the research we have been doing.

I then diverted all of my attention to the Dermatology group (or GOD as he likes to be called). They started out their presentation with the fact of how dire it is that Liam have this expensive skin biopsy done right away today so that they can test his one good spot on his right arm to make a half uneducated guess as to whether or not that one spot is EB or Cutis Aplacia. The thoughts and ideas of the Dermatology group was passed around for what seemed to have felt like forever and I have never in all my life seen so many doctors in one room who are supposed to be working together, not be able to agree on an approach of action going forward. This is about a little over an hour into the meeting and I LOST IT!!!

I threw my notebook into the middle of the floor and yelled “ENOUGH!”. I explained to all of them that I was going to write on a piece of paper the word “YES” and the word “NO” really big and that I wanted to go around the room and ask each one of them to answer one simple question and that question was “Can a child of my sons age have EB and Cutis Aplicia at the same time, on different parts of his body?”.  Simple enough question so I thought. HOWEVER, after polling all of the doctors in the room, to my amazement the room was evenly split.  So, at this point I realized that I am now dealing with a group of doctors who cannot even tell me if we are about to biopsy for the right thing or not in a few hours not to mention what we are looking for. 

This post I am typing cannot even express the frustration I am feeling right now!  My emotions are still raging even as I type this to all of you. I had several come to me after the meeting and tell me they understand my frustration... but how can they? It’s not their son lying there looking up at them saying "Help me dad" and I feel like I am failing him. I can’t even compile a group of doctors who agree on what to do for him. So anyway, let me move on so I can stop crying right now.

There was a secondary meeting, after the original meeting, with myself and the head of pediatrics who just happens to be Liam’s doctor and he went on to explain to me that it was in Liam’s best interest to have a biopsy so that the genetics of his disease could be tracked going forward.  After a long bout of discussions I gave in and around 11am Liam had his biopsy done.

He was given a good amount of Morphine and Darvocet, and all of the area they punch biopsied was given a local, so I think it was relatively painless.  But because of the drugs, Liam spent the entire rest of the day in a drug induced kind of coma and did not eat hardly anything. Liam also had another dressing change on his arms and legs that I did take several pictures of since he was so calm and still lying there in his "little coma".  (see below-warning as they are graphic in their nature)

There are 6 pictures from today.  Some are better than others. Any opinions out there would be greatly appreciated and if my wife or I do not get back to you right away it’s that we are being bombarded with emails, texts, and Facebook inquiries, not to mention trying to do what’s best for the big man here.  So please bear with us.  We will be getting back to each of you shortly and thanks again.  As always the help and prayers mean a lot to me and my family.


  1. I cannot fathom what you and your family are going through. I followed another blog about EB and I will continue to follows yours. I will be praying long and hard for Liam and your family as you begin this long journey into the unknown and I pray that your little man will fight this as much as his little body can!

    1. Thank you! Your support is much appreciated at the family deals with little Liam's unexpected challenges. <3