Please help my best friend and her family…

Kolby was born at 33 weeks emergency c section. Was automatically put on cpap and iv. He was making progress slowly as a preemie should and then we were set on going on because he was doing all oral feedings and gaining weight. He stopped gaining weight so they kept him another night and they next morning he turned pale as a ghost and stopped breathing. He got him back enough to hook up all the tubes and ivs again and he started breathing somewhat normal again. They did blood tests and urine test and there was protein in his urine and then infection in his blood. They did a spinal tap and the fluid was cloudy and it came back the infection was in his urine. He ended up with meningitis which started affecting his brain. He was put on antibiotics for 3 weeks and is suppose to be done next week with it and he has been doing great. Today he started turning pale again and stopped eating yesterday so feeding tube was put back in. They did a brain scan and there is a significant amount of fluid building up on his brain. He started having seizures and has been on a eeg to track the seizures. They have him on meds to help stop them also. They are doing daily spinal taps to release fluid and test it. We are being transported to the U of M childrens hospital to have further testing done and hopefully have a temporary fluid drainage put in because the fluid is moving to a less easy spot to get to with just simple spinal taps. We are in line for an apartment at the hospital but there is a wait list for that.

Update on kolby: we were able to have a eeg done and no seizures were detected so that means the seizure meds are doing their job! His head size grew 3 cm in 3 days. We are in surgery right now for him to get a temporary fluid drain in his brain to release pressure and remove some of the fluid. Plan for a permanent shunt to be put in hopefully in the next week after his antibiotics are done for the meningitis:) thank you everyone for all the thoughts, prayers and other ways of helping our family! It is much appreciated!

update:

April 23, 2023 Update time: Kolby decided to make his own rules and got put back on the eeg and was moved to a more higher needs part of the NICU. We talked to the doctors on his care team and they said the head ultrasound shows a great amount of brain damage from the infection…he is proving he is a fighter and still wants to drink out of a bottle as much as he can tolerate which is amazing! We have a care team meeting this week to talk about cares for him when we come home and what that looks like with the therapies that will be needed and such. We can not say thank you enough for the all the help from our families with helping with the kids, all the thoughts and prayers and other ways of helping from everyone else! We have amazing group of people and I can not thank you all enough