2020 08 26

2020 08 26 Day 20

Alex opened his eyes for about 15 minutes on Tuesday evening

Our Status.

It has been a challenge to control all of the vital signs but it appears as if we are getting closer and closer to stable. Over the weekend the biggest challenge was to bring his fevers down. As a parent (at home) we would give tylenol and motrin and they go away with time. Here this is an entirely different situation. Doctors need to rule out everything that it is NOT in order to can get closer to understanding what it is so that they may treat the cause.  In the past several days we have had numerous blood draws. Numerous cultures taken. Spinal tap, Mri. Ct scans and xrays. They initiate the exams and www.  (we wait and worry). Most often we are then told what it is NOT, but not yet certain of what it IS that is causing the fevers...so there is this other test that we should do...blah blah blah

It has been 20 days in the intensive care unit. In the past several days we have seen progress in several areas despite all of the ongoing testing and poking, uncertainty, etc.

We are on new seizure medicines and they have made a difference for the better between Sunday and Tuesday. Sundays report was 26 episodes (that occured but our eyes did not see) and Tuesdays report which had 8 seizures, 5 of which occured in his sleep between the hours of 1000pm and 100am. I only mention the time here because this means that he is in a safer environment when seizing. We want No seizures but if he has to have them we rather he be on his bed than at the beach or on the road when having them.

Alex is still on the respirator and will remain on until his seizure meds are defined and at safe levels.  When the seizure meds are at safe levels they can begin to reduce sedation and remove the breathing tube.

It has been a rough road but we think that we may be seeing a light at the end of this dark tunnel.

It has been 20 days but I believe that today is the day that will start all of the recovery.  I have faith that we have gotten all of the crap out of the way and it is now time to start focusing on rest. Recovery. Rest. Recovery. Repeat....  

Prayer:

Mark 11: 22-24

"Have faith in God," Jesus answered." truly I tell you, if anyone says to this mountain, 'Go, throw yourself into the sea,' and does not  doubt in thier heart but believes that what they say will happen, it will be done for them. Therefore I tell you, whatever you ask for in prayer, believe that you have received it, and It will be yours. And when you stand praying, if you hold anything against anyone, forgive them, so that your Father in heaven may forgive you your sins."

God bring healing to this child. May he stand. Walk. Talk. Run. Ride. Dance and play with us all as soon as you give the word God.

Cycling Analogy:

We believe we can ride and get some distance...we just need to wake up.