Cindy’s Journal

July 27, 2012   7:45 pm

At 8:30 this morning our favorite nurse Lindsey came in.  We talked about the need for Adam to urinate or he would have to get the catheter put back in.  We woke him up and explained the situation to him.  He said okay in a frustrated tone…..he didn’t  want to be bothered right then he just wanted to keep sleeping……he understood the importance though and sat himself up in bed.  Lindsey and I unhooked all the wires, he stood up and walked to the bathroom.  I am amazed that he is able to walk as quickly as he does.  His fast pace makes it difficult to keep up with him, especially when I have to push the mobile IV unit.  It is such a blessing that he has his motor skills.  Happily it was a successful trip to the bathroom….. he did it…… that means no catheter…..another small victory!

A short time after our bathroom triumph, Adam’s physical therapist Joyce entered the room.  I wasn’t sure if he would be ready for the morning exercise routine…..all he really wanted to do was sleep but he complied anyway. I’ve observed that Adam is willing to try whatever he is asked even if he doesn’t want to.  He will often respond with an irritated “Fine” or “whatever”.   She asked him to climb out of bed…I naturally wanted to help him get his feet on the floor but Joyce stopped me and said he needed to do it completely on his own.  Its so hard not to help your child when you see them struggling…..but Adam is strong and was once again able to haul him self right out of  bed.  She asked him if he would like to go for a walk and he immediately headed toward the door….he just wanted to get it over with, I could tell.  He wanted to walk fast…..maybe he was showing off, I don’t know but it worried me a little.  I didn’t want him to be overconfident and run into something.  There were obstacles…..chairs, people…even a door swung open right in front of him and he avoided it.  He did two full laps around the track and was ready to go back to the room.   Joyce asked him where the room was……without hesitation he turned and went directly there.  I know at that point he was hoping to snuggle back into his bed, but there was no rest for the weary yet, Joyce had exercises for him to do.  Even though she seemed pleased with his ability to walk, she wasn’t going to be satisfied until he performed some toe raises, knee bends, and leg lifts.  He did pretty well with these although he was a little shaky on the knee bends……why wouldn’t he be, he’s been in bed for a week and has had two major surgeries on his brain. Overall he did well and we expect him to improve daily.

Not long after Joyce left, in came his speech therapist Cari.  When I saw her I thought to myself,  he has had enough already for the morning.  Cari spoke to him in a kind voice and he responded well to her.  He wanted to sleep so badly but was once again willing to comply.  Speech therapy is much harder for Adam because this is where his greatest deficits are…..this is where he struggles the most.  He is aware and knows what is going on around him but when he tries to speak there is a disconnect between thought and the motor skills of speech. Cari would show him an object such as a ball or spoon and would ask him to name the object.  He wasn’t able to name the objects without her naming it first.  I could see him straining to think and try to make his mouth form to the proper shape to say the word.  In his quiet, sweet little voice he said “ball”, “spoon”, and “toothbrush”.  She would also show him a card with the name of the object spelled out in big letters. ……. he was able to read some of them.  At times Cari would ask him to show how to use the spoon or toothbrush and he would gently bring the item to his mouth.  He seems so sweet, so innocent and vulnerable.  On Tuesday he had all his faculties and could speak, laugh, and hold a conversation.  Today he can barely speak the simplest of words.  I know it is only temporary…..but how temporary…. days, weeks, years?  I don’t know and the doctors don’t know either.  Dr. Lee said that usually people like Adam make slow progress for a while and then all the sudden one day they wake up and are talking normally again.  I just pray that we don’t have to wait too long for that day.

Some friends from Mike’s office were so kind and brought Adam a bag of goodies.  Inside were some books on reptiles.  Anyone who knows Adam knows that he loves all kinds of reptiles, especially snakes.   He has quite a few as pets at home and guess who has to feed them while he is in the hospital…yep…me…but that’s another story.  I opened the book on snakes and began to show him the pictures and his eyes brightened a little…he was interested and wanted to see more.  I would say the name of a particular snake and then I would ask him to repeat it….trying to do it in a way that he didn’t think I was doing therapy with him.   Adam was able to say reticulated python, gaboon viper and many more.  He began to wear down quickly so I stopped and let him rest.  It was very encouraging to hear him say complex words.

Adam has continued to be in a lot of pain but he doesn’t complain.  The nurses give him pain meds and anti nausea meds around the clock.  They have to do this because he won’t say anything about his pain on his own.  If his pain gets to high he starts to feel sick and will throw-up.  He hasn’t been able to keep much food in his stomach….only a cracker and a little soup today.  I am hopeful that tomorrow he will be able to eat more.

I often sit next to Adam’s bed, hold his hand and gaze at him.  He is still a handsome young man even with his swollen, misshapen head and giant sized scar. At times he will give me a smile or a gentle kiss on the cheek….these are the moments I cherish as I wait for his return.

Please Adam don’t be gone too long…..oh how I miss you so.  You are a special son of our Heavenly Father and I feel blessed to be your Mom.

July 28, 2012   2:30 am

I was jolted awake by a rustling sound coming from Adam’s direction. Through my blurry eyes I could see him struggling with his bedclothes and trying to sit up.  He was reaching wildly to the left side of his bed….but what he was reaching for I couldn’t tell.  I through off my covers and raced to his side and I could see he was trying to grab the mobile IV unit and pull it around the end of his bed.  I realized he needed to go to the bathroom and he was in a panic to get there.  I hurriedly unplugged the IV unit and all of the cords and wires attached to him and escorted him to the bathroom just in time.  Whew! That was a close one, almost didn’t make it.  When he was finished and climbed back in bed I could see a grimacing look on his face….now what was wrong…seconds later he motioned to me to get the pink bucket.  Poor kid……he threw up again…..when are we going to get this nausea under control?  The nurse came back in and gave him some more anti-nausea meds….hopefully he can sleep now.  Sleep, that sounds nice.  I looked at the clock and it was 2:00am.  I was asleep just over an hour before this all happened and now I can’t go back to sleep……so here I sit typing these early morning events.