9/4/2011 - Legos

Today has been a busy day here.  Sam has spiked a fever a few times and did last night as well.  They assured us this often happens after surgery and that they were not concerned.  He is already on strong antibiotics to prevent infection anyway.  They did take him this morning to get a chest x-ray and did a blood and urine sample to rule out infection of any sort.  The chest and urine came back all clear and the blood takes a little longer.  He has not had a fever again today so that is good.  His congestion is better and Sam is working at his breathing exercises to help it improve further.

He had a decent night's sleep and his CPAP numbers were great again.  His AHI was 0.2!!  (See previous post for an explanation of this)  He has gotten out of bed maybe a half dozen times.  His body is still very weak and we are really having to push him to use his muscles and start regaining strength.  Moving around is still a struggle.  He is very sluggish.  This morning we got him sitting up in bed and I told him I needed to have him try an activity that made him use his arms and fingers.  I said he could even just squish around some clay if he wanted.  Those of you who know Sam well will not be surprised that he asked if he could try to put together Lego people.  He asked if I would show him the pictures so he knew what parts were supposed to go with what people, and then hand him the right parts.  Needless to say I never found the right part he was asking for so he finally asked me to just make a pile of people parts in front of him and give him the instructions.  Nothing can motivate a 10 year old boy to move like Lego's, huh?

Sam (and his dad and I) enjoyed having family visit this weekend.  Nathan said he was glad that Sam's surgery was over so now he could play with him.  I broke it to him gently that Sam might not quite be ready yet, but we had a good visit anyway.

He also asked if he could try sitting in a real chair.  He sat there for a good bit and watched a movie.  He managed to sit for maybe an hour before he wanted back in bed for a nap.  This pleased everyone as it does take some muscles to sit upright that long, even though it seems passive.

Eating is also one of our tasks for the day.  He was cleared for a liquid diet sometime last night and worked hard to get in Gatorade, water and juice.  He did so well they cut his IV fluids in half today and cleared him for a full diet.  He was pretty uninterested in eating, but we made it clear that wasn't really an option.  He was told to pick anything he wanted and we would try it, even if he only took a few bites.  His choice - McDonald's milkshake.  So, I ran down and got him one.  (I did say pick anything, right?)  He drank a good 3/4 of it.  Way to go Sam!

We made good progress today and I am thankful, but it was a hard day, too.  More moving is necessary, but it also brings more pain.  Sam is pretty sad and discouraged right now, and just really down about the whole ordeal.  I really don't blame him.  I would give a lot for him to want to smile or laugh.  We are keeping him well occupied but nothing has sparked much interest in him.  So prayers that Sam would feel some joy and find something to laugh and smile over.

Praise God that Sam's incision site looks good.  It runs about 4 inches, from the back of his head to his neck.  They watch it carefully because that will be the first sign if any spinal fluid begins to leak.  It is dry and looks appropriate.

We continue to praise God for the small steps of progress that are made, and look forward with hope to returning home soon.  Please pray that Sam would be encouraged keep on being brave and working hard. I pray that God would continue to provide him strength and courage, and that he would be able to get home and back to the things he loves as soon as possible.  God is faithful, and I know in whatever comes He will continue to hold us in His strength.