It has been an incredible day. So many prayers answered. God is working!
CSF? – yes, there is a suspected brain dura leak but they feel it is from when cranial pressure has a drastic change such as coughing, vomiting, crying, moving elevation quickly, etc. that it is getting squirted through the stitches on the three spots where the brain dura tore during surgery. They don’t believe it is a new leak that needs surgical patching, they think it will heal on its own!!! Yay!
As of right now the Headache from CSF and intercranial pressure is being controlled perfectly by getting the right pain meds on the right schedule. His photophobia is also not bothering him a ton!
I. Am. In. Shock! 😳🤩
My sister, Christin, texted that my nephew, Adam, Really wanted to FaceTime Malakai and when Malakai heard that his cousin wanted to talk with him, he said that his goal was to work really hard today to do the hard thing of opening his eyes and trying to figure out how to make it hurt less why his eyes are open. He has been so scared to try and as the light hurts even through his eyelids. But when he heard that Adam and his siblings wanted to FaceTime later, He decided he felt that he was feeling well enough today to try!
Malakai worked really hard to find which angle hurt the least to turn his head away from the sunlight coming to the window even through the shade. When he found an angle to turn his head and was able to open his eyes more than he ever has since surgery he said, it’s so weird mom, I can see out of the corners of my eyes?! Surgery worked! He can see and he has peripheral vision which he hasn’t had!
🥳🤩🥳
This is HUGE!
Swallow/Speech therapy came and got Malakai to try and eat some pancake. She had the genius idea of saturating the pancake with butter and syrup so it was almost soft enough to chew with his tongue. 1 for easy of teaching him to chew, and 2 because it added to the caloric punch per bite. He only had the energy to eat 5/6 bites but I will take it!!
First time open since surgery!
PT/OT came and talked to him about working on sitting up and then trying to walk to the recliner so he could build to a commode vs having to use a bedpan. He was very motivated by this and worked to sitting for a little time and then….
They helped him walk to the recliner!!! He is still a but disoriented and needs vision guidance as he learns his special awareness of his new vision but did it!!!
It took all his energy and soon was fast asleep but I am exploding inside with joy and newfound hope!
One of his huge motivators is he REALLY wants to be with Isaiah on his birthday on the 13th. We shall see but he is doing all the hard things to try and make that possible.
🥳🤩🥳🤩🥳🤩🥳🤩
I got Malakai some slipper socks to wear while learning to walk around post surgery. They are really soft and have traction that helped with stabilizing Malakai today while walking. I decided to splurge and get some for myself too. Best choice! Lol they are soo cute and comfy.
EKG results came in later in the day with the result of bradycardia and slow sinus arrhythmia. I spoke with the neurosurgeon and he said that sometimes arrhythmia can happen when there is trama to eyes so this would make sense. Either that or Malakai also could just have a special heart to match the rest of his specialties. There is still so much unknown about Optiz G BBB. So far his bloodwork is showing that he is tolerating his slow dancing heart for now. We will just keep an eye on it. And of course, pray.
The flush sample from last night came back with the results of no blood or CDIF so we are thankful. They don’t know what that was but we still reached out to GI as he had a very unproductive and painful flush tonight. They believe he could have a lower gi blockage. Enema in the morning if it doesn’t come on it’s own tonight. Praying for 💩.
They found hives on Malakai’s neck, back and bottom. We are thinking it is probably a stress rash. We will be keeping an eye on it as he has also not tolerated the amoxicillin great stomach wise. So that question isn’t out of the picture too. We shall see.
Tomorrow’s goal is to get Malakai eating and keeping down good better. The CSF and intercranial pressure in his head is making him feel motion sickened every time me moves around too much or eats.
Malakai kept down today: 6 bites of blueberry pancake that we saturated with butter and syrup to soften and to give a caloric boost. 1 snack pack chocolate pudding cup, and 2 Capri sun pouches. chicken noodle soup and half a banana were enjoyed but didn’t stay down. Praying for a calm stomach and more caloric intake tomorrow.
Today was such a blessed day, even with the hard times. I pray tomorrow brings even more healing and miraculous moments so we can get those boxes checked and be home with our family.
Trust in my Divine Providence 