It was packed in the ER but we didn't have to wait very long. Kids with shunt malfunctions usually move to the front of the line. Philip had a CT scan and x-rays. The ER doctor could tell there was something wrong with the shunt so she called neurosurgery. The resident neurosurgeon, Dr. Connor, actually arrived very quickly. He explained that the catheter or tubing connecting the valve to Philip's abdominal cavity had disconnected. It had retracted down into the abdomen, not causing any problems there but just a coil of tubing inside. He had some fluid buildup in his ventricles where it has not been able to drain properly and some fluid right at skin level which is the swelling I saw. Philip does not actually seem greatly affected outwardly. It does not hurt him when you touch the swollen area. He does not act like he is in pain. Thankfully, his is a slow fluid buildup or it would be more time sensitive. It is not an emergency situation now so he will have a revision surgery tomorrow, which is his neurosurgeon's normal surgery day. Praise the Lord it happened on a Monday and we can have the controlled environment of her normal surgery assistants and staff. They will use both existing sites (one in his head, one in his abdomen), check the valve to make sure it is working properly, insert a new catheter, and remove the old catheter from his abdominal cavity. If all goes well, we should be home on Wednesday.
If you remember older posts, the hospital here is not quite set up for keto kids. We knew we would be doing a lot of the care and management. That was only proved true when they showed up with his supper tray. The first thing I saw was a mound of ice cream with sprinkles on top. Not for Philip! We are taking care to regulate everything: medicines, anesthesia, fluids, food, topical products. It would be easy to assume in the hospital they can just take care of all the special care needs, but many of the nurses have never even heard of the ketogenic diet. We still haven't seen any seizures so this is a critical time.
Please pray the surgery goes well tomorrow, the doctor has wisdom and skill from the Lord, and that Philip can recover quickly. Please pray we can maintain ketosis in this situation. Pray for our whole family to trust the Lord through yet another situation out of our control. He is worthy of our trust! I want to say a special thanks to our Oklahoma City family and friends who have stepped up to the occasion to care for us and do whatever needs to be done. You have no idea how Th e