On June 4, 2010, my oldest son Isaiah underwent his 2nd craniotomy, which was his 6th brain surgery, to remove as much of his craniopharyngioma brain tumor as possible. I won't take time now to go into how he is a unique case or why we didn't do this before. Suffice it to say, the surgery took less than half the time expected and they were able to completely remove all but a few millimeters of calcified (dead) tissue. Since that miracle, we have faced many gains, losses, and lessons. It is my hope and prayer that by sharing these with you, some of the ways the Lord has worked and is working in our situation will be shown. And although each of us (Isaiah, my husband, our other 2 children, and I) have been effected by them differently, these need to be from our side. His siblings were shielded from much of this and Isaiah doesn't remember any of it now. (Short-term memory loss is one side-effect from brain surgery)
Isaiah woke up from surgery without vision. His optic nerves are healthy, there's no bleeding, no swelling that would cause it. Endocrine, neurology, and opthamology cannot explain why he cannot see. Yet, his mind supplied him images as it tried to make sense of what it sensed. He saw things that weren't there and tried to interact with them by reaching out, opening jars that weren't there, eating food that's not real, etc. What further complicates this is that he suffered from psychosis. This is from him spending 4 days in ICU immediately following surgery, his sodium levels thrown off from surgery, and because of the area of brain effected by surgery. Many times, he thought he is somewhere else. There are times when he didn't even recognize us as his parents.
The amazing blessing of this time is that even when he was not in his right mind, he was concerned with showing and leading others to Jesus and during his hardest struggles he cried out to the Lord-praying aloud for help and to glorify Him.
With not having his vision, Isaiah was forced back into an almost infant-like state. He couldn't do anything himself. We had to begin with the basics and teach him to get his hand to his mouth so he could begin to feed himself hand-held foods and be able to drink from a "sports bottle" that was really a sippy-cup with a straw. He also had to learn to feel the food against his mouth as we spoon-fed him to know when to open his mouth for a bite or a drink. Once he had that, we began to work on teaching him to hold and use a fork and spoon again. These are much harder to do when you cannot see the food that you are trying to get onto them. He had to learn to use both hands together, as they didn't seem to naturally want to, to hold the container with one and scoop with the other. At this point, we weren't even trying to check out his mobility yet.
As he was moved to a regular room and his sodium levels started to stabilize, the psychosis episodes became better. We daily had to walk a line between "pushing reality" and "going along with him". We had to determine when to correct him (no, honey, there's not a monkey in that corner) and when to go along with it (it's okay, I'll take the snake out of the room). We learned pretty quickly the more we tried to push that we were his parents the more agitated and terrified he got. Those times, he did best to just give him space (as much as we could safely)and try to gently find a "connection point"--some frame of reference that helped to bring him back to reality. Sometimes he was hilarious. Sometimes he was terrifying.
Blessing--the worst episode while we were still at Le Bonheur lasted 20 minutes. Let me just say, Isaiah thought we were strangers there to hurt him and he was beyond wide-eyed terrified and shaking. We were trying everything we could to help him find that connection point but nothing worked. He wouldn't answer us or do anything we asked. We had to let him walk around his room and try to give him space. Finally, he sat on the couch with us in his room. Now, remember...he can't see anything! The Lord prompted me to remind Isaiah of lunch earlier that day. See, at lunch it was just the two of us, and we called it a "lunch date". While he ate, the Lord impressed upon me to get out the hymnal that we just "happened" to bring from home and to sing some songs to him. During one of the songs, he joined me in singing. So, as he is struggling in this episode, I reminded him of having a lunch date with his mommy that day. He remembered that. I reminded him of singing with her. He remembered that. So, I started singing "Power in the Blood"...that was the song. As I started singing, he again immediately joined in on his lines. I sang the whole song with him. By the end of the song, he was completely back to himself. He knew who he was, where he was, and who we were. There is no special power to that song, but the Lord used it mightily to restore our son that day!
After he got to a regular room, we also began to get him up. First to stand by the bed and then to take a few steps. Like with his other surgeries, he needed to relearn his coordination and balance. We noticed that he walked better while singing, so as we were walking him down the hallways we sang a Veggie Tales song "Keep Walking" and "I Walk By Faith". We prayed that not only would it help Isaiah but that it would encourage other patients, their families, and the nurses. The OT/PT nurses had him singing "Father Abraham" as well. He began those services as well as Speech (for memory) while at Le Bonheur. These would carry over to St. Jude once we were released. The last several days at Le Bonheur were filled with sodium checks, rehab services, and some carry-overs from ICU. These included off/on fevers, short, shallow breathing, and pain in his left ankle. The fevers were explained that it resulted from the area of brain traumatized by surgery. The shallow breathing was looked at by chest x-ray, which came back clear. And the ankle pain was thought to be result from a blown IV and another attempted IV stick. As we left Le Bonheur 11 days after his surgery, we knew he would be followed up at St. Jude as we have since the beginning of this journey almost 3 years prior.
I know there are many things that I am leaving out, like all the wonderful visits from friends and family, including several families from church coming and singing worship songs with us in our room, all the cards and calls of encouragement, and more. If you were part of that, we daily thank the Lord for you and pray that He continually blesses you for your generosity and willingness to follow His leading :) As we left Le Bonheur to head home, we knew the road ahead was going to be different from what we'd traveled before, but we didn't realize just how different it was going to be....