Yesterday was one of the lowest points in our lives together. The thought of losing Tyler now was simply too much to bear. We did everything in our power to keep him with us. Something worked because he lived to see another day.
This morning he is back on the ventilator for support. The amount of activity in that brain of his is firing and mis-firing all over the place. He was placed on an increased dose of his seizure medication and two additional seizure medications were added. Rather than take any chances of losing any more brain function -- we figured we would err on the side of caution.
This afternoon Grandpa Carol made a visit to see Tyler at the hospital. He was pretty happy to see him and Grandpa started to read his favorite story books right away. I slipped away to take a 30-minute nap to gear up for the rest of the day.
Upon my return I was pleasantly surprised by the Physical Therapist who had Tyler sitting upright. He has been in a prone position for more that three weeks now and is losing his muscle mass. It was time to get the boy back to work.
He sat with assistance for just less than 10 minutes total. She kept a towel around him to maintain control over his tired body.
In this photo you can see how far the reaction to some of the medications have spread down his shoulders to his arms, across his face and down his back.
A few more days on the ventilator and/or C.P.A.P. and he should be able to wean off the support again.
Craig and I are getting tired. We're at his bedside at least 15-hours a day with Craig not returning home until after midnight many nights. Christi will be joining in the fun when she comes up to the Phoenix area this weekend to give her tired mom and dad a little break. Thank goodness for older siblings.
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