I am just beginning to understand what our neurosurgeon was trying to explain the very first day. He said,"There will be many many highs and many many lows. You can't pay attention to those! You have to pay attention to whether you are making an overall progress up." Today was excruciatingly hard. It will seem that we have made some progress and then we will be slammed, in a nose dive, to the ground. Jonah's brain was storming! He has been battling high fevers, high blood pressure, high ICP's. There was no medication which would take the fever down. They tried 3 different meds to take the high blood pressure down and of most concern was the excessively high ICP. His doctor told us that he may have to take him back to surgery to remove the other side of his skull to get the ICP down. He told us that he was going to try to put Jonah in an even deeper coma with phenobarbital first to see if this helped. They had also placed him on a cooling blanket for his fever with bags of ice in his arm pits and a fan blowing on him. The only thing covering him was a hospital gown. He had goose bumps and his hands and feet were ice cold to the touch while his body was burning with fever. I was told I could not touch him or speak out loud within Jo's hearing distance as this agitated And exaserbated his declining condition. His doctor looked at me and told me that Jonah was as sick as anyone could be with this injury, reminding me that his life was hanging by a thread. He explained that he really wanted to get an MRI on his brain to get a better look at it, however Jonah is so fragile he may not make it through that test at this point. He would also like to place a trach to reduce the risk of infection and damage to his esophagus, and place a feeding tube directly into his tummy, however Jo is too fragile for this. They hooked his head to
At least 30 wire leads for an EEG with a live video/audio feed to SLC for evaluation of seizures we may not be picking up due to the paralytic drugs being used on him.
They ordered the barbiturate and gave Jo a bulsa dose to see what would happen. Almost immediately his numbers dropped in all areas. His temp even went to a normal level for the first time in 2 days. His brain needed a rest from the storming, it's high state of constant fight or flight. We may be in this place of deep drug induced coma for several days to keep him safe from the storming!
Each one of my other children is experiencing some form of high anxiety and showing signs of grief and stress. I am pulled from one to the other and neglecting each at the same time!!! There is no way to get through this except with help from my Savior and I pray fervently for strength to be what I need to be and for Him to heal my son. I pray that Jonah is being cared for by angels while there is no physical or verbal nurturing I can do to give comfort and allow him to know that I am near him. It is so excruciating for me, there are just no words!!!!! Without Devine intervention, my mommy heart can't take it!
(Written by Jonah's mom)