Good afternoon friends… I am so sorry it took me so long to get this update out to you guys. I’m honestly not even sure what time it is right now…time is so strange when you’re in the hospital 24/7.
After what felt like quite possibly the longest day of my entire life yesterday, I was finally able to see my boy at about 10:00 PM last night. Let me just tell you that seeing your baby hooked up to SO MANY tubes, wires and lines is a bit of a shock to the system.
I had several moments last night, lots of it due to pure exhaustion I’m sure, where I found myself back in the headspace of questioning whether we made the right choice. Everything happened so fast leading up to surgery and I don’t think I had a lot of time to fully process the gravity of the situation or what things would truly look like post op. Even with hearing the surgeon say he was confident that everything went well, walking into Everett’s room in the PICU and seeing my baby look so tiny and helpless laying in such a big bed all alone just broke my mama heart.
Thankfully the medications they have him on are keeping him comfortable. They chose to leave him intubated overnight, there were 2 reasons for that. First reason being that despite his vital signs being very stable all through surgery, his blood gasses were a little bit screwy at the end of surgery so they wanted to give his body a chance to rest and begin to heal overnight. The second reason is that they want to be able to get a post op MRI today to ensure that all the disconnections were successful and to monitor for any early signs of hydrocephalus. I was able to speak with his surgeon over the phone early this afternoon and he said that as long as everything looks good on the MRI, that the plan is to wean down the sedation and extubate him this evening.
He will be headed down to his MRI shortly, our prayer is that the surgeon and radiologist will be pleased with the imaging and that we can begin to get him off the sedative and then off the ventilator. He still has such a long recovery ahead of him but we are hopeful that every day that passes is one more day with out seizures and one more day closer to a full and complete recovery.
Again, we are so very thankful for all the love, support, thoughts and prayers we have received over the past 36 hours. Please continue to pray for our little warrior boy. Pray that the MRI shows exactly what the surgeon is looking for, that they are able to successfully get him off the ventilator and that he is able to be weaned from the sedation easily. Pray that his pain is manageable and that he is able to remain as comfortable as possible.