He went back about 45 minutes ago fir his repair. They advised us they are probably going to be placing a drain in his lumbar to help relieve any pressure from future fluid build up. He is facing another surgery next year for his craniosynostosis but they can not do it until we solve his leak issue.
Prayers coming…
I am doing okay. If you’d told me a year ago my son would have not one but two major brain surgeries at 4 years old I’d have looked at you like your crazy. Just feeling a little guilty & sad. Will feel better when it’s all said and done. Nurse just called. They finished the first part & are getting ready to place the drain. He should be out in 30-45 minutes.
Dr just came out drain is in place & he did okay. His pressure in his head is very elevated due to his craniosynostosis (premature skull fusion). Good chance that it will continue to fail until we fix it but they are really hoping this will hold. He did well & she did reseal the patch as best as she could without completely reopening & taking it all apart.
That is great news. You are great mom,a very strong lady!
I’m just laying in bed with him per his request. I’m ready for bed but he is well rested lol. Waiting on mri results to determine if they unclamp his drain
Not much as these beds aren’t quite built for 2 lol. He’s in a lot of pain today from the drain. His mri last night showed low fluid levels so they were unable to unclamp the drain. He will receive another today to see if there’s an improvement. You know the pain level is high when your baby is screaming for the doctor to hurry up with the medicine. He’s sleeping for now but needs a new iv so is going to wake up to discomfort 
Oh I’m sorry to hear he is having a tough time. Know you are on the path and doing the right thing for him. bless you both.
Jenn
Still attached to lines
Okay officially worried… we are still in the hospital. He’s thrown up 3 times in the past 36 hours. Is withdrawn & sleeping large amounts. Nurse just came to check him & his heart rate is a little low & pupils are sluggish. Doctor wants them to come check him every 2 hours & I have no idea what happens if it gets worse… this is not fair he’s only 4 & has been through so much in a short time.
Oh & he’s also complains of headaches
Ok, sending prayers for improvement and a few extra Angels.