Day 41: May 17, 2012

Day 41                                                                                                  Written May 17, 2012 5:11pm

Dallas slept pretty well overall.  Travis slept in bed with him all night; every time he would move, Dallas would move.  But at least they got some rest.  The doctors also lowered Dallas' feeds last night, running from 8pm to 6am at 75mL/h.  Their hopes are to get Dallas to eat even more throughout the day.

Dallas had some applesauce for breakfast.  He has also had a good appetite, eating milkshakes, having lots of chocolate milk and applejuice, and a few odds and ends. 

Dallas' dressing change didn't go too terribly well.  Michelle, one of the resident doctors, came in to take some of the Aquacel off his leg.  He did not enjoy this very much.  He was very helpful, however.  I think the anticipation of his pain is worse than anything.  So rather than him kicking and screaming, we let him take his bandages off.  This usually calms Dallas, and it did mostly, but when he pulled the Xeroform off his leg, it was quite traumatic.  He saw his right leg and said "Holy cow!  Look at my leg, it looks so scary!" We had to talk to him for about 20minutes to calm him down so that he would continue with the rest of the dressing change.  It's so hard seeing your child fearful of himself.  But we assured him that it was getting better, and that it will take time, but soon it will be healed.  There is something that is concering us, which are a few spots on his shoulder, and back, where there are really large areas that look like blisters.  Michelle said they were granulated tissues, where his body is trying to heal too fast, and it's causing hard tissues to form; she referred to it as hypotrophic scarring.  She said that they could use silver nitrate to cautarize the areas, so we have a million quesitons about that. 

After Dallas' dressing change, he did physical therapy.  Dallas walked all the way to the playroom, which is a good distance from the room.  He stopped quite a few times, twisting his ankle once, but it wasn't anything too bad.  So he continued walking.  Once we got to the playroom, he sat down and played with a bunch of different toys.  I went to get the bear chair and when I got back, Dallas was sitting in his daddy's arms, crying.  Come to find out, he fell.  The physical therapist wasn't guarding him like she was supposed to be, and he thought Travis had put a chair behind him, so he ended up falling.  My first thoughts were, "is he ok" and "did he hurt his grafts"?  The doctors have told us that he can still, and will for a while, very easily be able to shear his grafts.  There doesn't appear to be any collection of blood, so we can only hope nothing has been affected.  Rather than being pushed back to the room in the bear chair, Dallas wanted to walk, so that he did.  He did really well, so we are pleased. 

Dallas and Travis played the game for a while.  Travis said something, I can't remember what it was, but Dallas all of a sudden said, "That was so freaking funny".  We all burst out laughing.  Then, he said something again and Dallas said "Dad, that was classic".  It's great to see that side of Dallas coming out again. 

But then, Dallas says other things that really make you sad, like when we told him that if he would eat more, they would take his feeding tube out.  Rather than him being happy about that, he has become accustomed to the tube, and said "I will NEVER eat again, they are NOT taking my tube out".  Another thing was when he asked how many more dressing changes he had to do, and we told him just for a little while longer, and he broke down crying saying "But you said only five, then four, then three, then two, then one, now none".  He couldn't understand that this is just a little while longer. 

Hopefully things will go better throughout the rest of the evening, and he will eat some dinner (he asked for spaghetti).