Cade did in fact make it down to MRI yesterday by 11 and did great. He had a repeat MRI with and without contrast which was planned for post op comparison and review. Dr Ruge was very happy with the results. It shows a full resection, with the exception of that very thin layer he himself knows he had to leave on the brain stem. But he stated that is shows there are no pieces of the tumor that they missed and left behind, the scan shows they got everything. There is no bleeding, no large pockets of air, and no hydrocephalus. This was so great to hear, not only because of post op complications that can happen with bleeding, but because the initial MRI showed the enlarged ventricles and hydrocephalus because the tumor was pushing the cerebellum over so much it was then blocking the normal flow and drainage of fluid through his brain and ventricles. They no longer see this and you can see how much smaller the ventricles are and the fluid draining now where it should be along the path on this MRI in comparison to the initial MRI. The PA showed me the before and after images. Amazing.
After he woke up from MRI they pulled out his arterial line and his foley! He handled all the tape removal and line removals like a champ!! It is great to have those out. He had a good day of rest and little visits from grandmas and his great aunt and uncle.
Last night, however, was challenging. He was up every hour or two either uncomfortable, pleading to go home to his own bed or move to the couch with me, begging to snuggle on me like we had been doing just a few days prior, or waking up screaming from a nightmare yelling things like- get off of me, get away from me. He tried to pull his IV out of his ankle once thinking it was his sock. As any momma can relate, this was very hard. It’s so hard to see your babies uncomfortable, in pain, agitated, sad. But mostly in pain. He needs to be moved every couple of hours for the sake of his neck, because the poor thing insists upon positioning his chin and neck down no matter what we do, and for his EVD. The strength of this sweet boy amazes me and brings me to tears inside all at the same time. He knows it’s going to hurt when it’s time to move and he says this to us. We explain yes it will, but just for a short bit and then it will feel better. Sometimes he wants me and/or the nurse to move him. Other times he tells me and the nurses he wants to do it himself and through his painful cries and screams of ouch, he picks his head and body up and moves himself to his other side entirely in his own. The love I have for this boy. And I pray that this strength is nothing but another sign from God letting us know he is strong enough to get through this. They always say, kids are resilient.
Again, I will close with my one fun sign from God yesterday. As I was typing the MRI update to my family, I was typing foley and was autocorrected to the word Glory. I couldn’t help but laugh and smile as I closed my eyes a minute. I shared this with my family in that same text followed by my interpretation of it- “glory be to God!” Ive typed foley many times since then, never to be autocorrected to that again. I know it was the Lord with me, his hand on my shoulder, as I took in the report of the new MRI results and shared the happy news with our families.
Our Warrior Journey 