Neurosurgery came first. The doctor who came today is the partner to Dr. Gross, Philip's current pediatric neurosurgeon. They would prefer to wait until tomorrow or Tuesday to do the surgery to drain the fluid. They hope to see him rally a bit from the flu, being hydrated and with the fever down. However, as they monitor him closely in ICU, if they feel he is weakening or getting sicker, they are ready and would choose to do surgery today. Dr. Gross will be back in the office tomorrow and would do the surgery if it can wait. The surgery will place a drain in Philip's head and then we will stay in the hospital for a few days because the fluid will not drain out all at once. It will need to drain gradually over a few days. They will then remove the drain and check for any build up again at a later date. This will not be another shunt like his first. This fluid is a mixture of bodily fluids and most likely has been there for months. It could be what has caused his imbalance issues for the last several months. It was not there in April 2013 when he had an MRI and CT scan. They do not know exactly what caused it but it could have been a fall or series of small falls. There could also be the possibility that his current shunt is draining just a little too much CSF and that makes way for the brain to atrophy just a bit, leaving room for the fluid to build up. They will check that out and make a decision about his current shunt before all is said and done. They may need to replace it with a valve that drains slightly less fluid.
Neurology came to make sure with his seizure changes that he was not in status epilepticus. That is the state where basically the electrical activity in the brain is continuous and requires rescue medications to stop the seizure activity. He is not! Praise the Lord! He has been so weak and sleepy, it has made us wonder a time or two. She was also checking to see how seizures were clinically presenting since he came down with the flu. That means what jerks, behaviors, etc are accompanying the current seizures. There are specific times and movements that are showing when he is having a seizure so that is another reassuring note that he is not in status. She also decided based on those signs that he would not need to have an EEG done today. That is good since those stress Philip out and today we are trying to gain ground and rebound from the flu. But...he will probably have an EEG before we leave the hospital. We are not opposed to that since that will help us know where he stands with seizures now that everything has seemingly changed. She will moderate medicines to help get the seizures under control hopefully before the surgery. Since he has not had the tonic seizures over the last week, it would be nice if it was possible to get them under control. Dr. Herren, Philip's epileptologist, and Dr. Arrington, his neurologist, will be in the office tomorrow so we will see them as well. Very likely he will have an MRI to give further information about the fluid buildup before they do surgery.
He has had to have blood drawn several times today but that means they are checking everything and we are always supportive of the doctors being thorough.
Yesterday, I sat down mid-morning and just held Philip and rocked him. He was so tired and weak. I felt so helpless. I cried and prayed. Last night, when we heard news about the fluid buildup, there was actually relief that came into my heart. Finally, something that could be addressed, something the doctors could take action on. I know it won't be the answer to all of the problems that Philip faces, maybe not even the tip of the iceberg but the Lord allowed the flu to shed light on a separate problem that needed attention. I thank Him so much for that. This morning I read in Psalm 54, "Hear my prayer, O God; give ear to the words of my mouth". And then in Psalm 55, "Cast thy burden upon the Lord, and he shall sustain thee..." His Word is true. I know He has heard my prayers and yours. Thank you so much for praying! We have felt His grace and strength. What a good God! Specifically, you can pray he rebounds from the flu and gains some strength back today and for his team of doctors who will assess the situation tomorrow and make decisions on his behalf.