2020 08 20

 2020 08 20

Day 15

Status:

Still in deep sleep. He tries to come out of it. Yesterday morning and afternoon they introduced seizure medicines to control episodes that he started to present. We were told this morning that for the night shift between 7pm and 7am the eeg had not shown any sign of seizure activity...no episodes recorded. (They will go back to look in detail). We hope that they can find the right cocktail of medication to control his seizure episodes while controlling all other things as well. The goal is to increase seizure medicines and decrease sedation medicines safely so that he can begin to wake and show us what he can do.

This early morning his temperature spiked. We arent sure of the cause, It could be infection, pain, or both.

Fevers are common in these situations, but we rather not have one right now. He ia on medication for it and on a temp controlled blanket.

Yesterday they started going up on his normal nutrition through a J tube every 4 hours. He appears to be tolerating it, so they increase the amount every 4 hours. Hopefully this will make him stronger.

Last night he showed signs of his stomach and bowels waking up, (step in the right direction).

Yesterday afternoon the Physical Therapist showed us a few bedside stretching exercises for Alex. Through the wires, hoses,  etc. We gave him PT 2x yesterday and it appears as though both feet and legs gave us a little push back. He raised his right hand a few times when he was frustrated.

Our Status:

We sit and watch. We are starting to see a little more of him as they peel ivs, Wires, and hoses away one by one. He still has a lot of wires, iv lines, hoses, pumps, machines, etc. but in our eyes a big difference is made every time one wire or iv is taken away.  This all remains a horrible roller coaster ride of his and our health, feelings and emotions. When his eyes open or when we feel that slight resistance in his feet or legs or hands, we are overjoyed, yet when any of his vital signs go up or down and the alarms sound, we panic, skip a breadth and wonder...what the heck is next??? What now???  It has been 15 days of watching him this way. Yesterday and today are nowhere near comparable with the stress level of day 2 thru 5. We don't wish that fear, stress, nor anxiety on anyone.

Today He lays still, he opens his eyes a little, he is showing us that he wants to wake up.  He opens his eyes. It is clear to us that they are not focused.  We put on the tv with his favorite videos and he looks. He has a plain stare, but seems to be trying to follow the colors for a short period of time. We stand by his bedside and sing to him. We think he hears us. His eyes sometime follow us or the sounds that we make.

Prayer.

God make today a new day. Make today a day of change. Bring strength and healing to our child.  So many people pray for our strength healing and recovery. Please hear thier prayers. Through the intercession of Jesus and Mary we pray.

Cycle analogy:

We spin a lot. We are moving a little.