I remember calling our families and friends to tell them the news. I remember wanting our family photos taken before… before he dies. I remember planning out his funeral. I remember laying by his crib while he slept, listening to him breath. I remember yelling, begging and trying to make deals with God.
But most of all, I remember feeling more helpless than ever before.
How could this be happening? I had told my baby he would be good by now. He wouldn’t hurt in his head anymore. “Just get through this and you will be ok”, I said after the last surgery.
I lied. (Is it a lie if you didn’t know?)
After a lot of confusion and run-around, the hospital told us that we would need to have him seen by the neurosurgeon that they did have on staff. He was not a pediatric neurosurgeon, but I guess he would do. At this point… there was still no pediatric neurosurgeon. We would take whoever we could get.
He referred us to another doctor. Saying it was urgent and he needed another opinion. I am totally ok with that. He didn’t do “tiny” brains.
After MUCH ado about getting Gerrit’s records to this next doctor, we finally saw him and he confirmed the fact that the Chiari had returned, and that there was indeed a cyst in his spine. However he was not a pediatric doctor either. And he wanted us to get him to one sooner rather than later. He said that the cyst was a great concern and could cause death if it were to enlarge anymore.
I did not quite grasp the cyst part yet… I was still back on the Chiari being “back”. How the heck does it “come back”? They took out so much of his bones back there… how in the world could it be compacted again.
I honestly don’t remember much of what he said after that. I believe he was probably a very good neurosurgeon, and he probably explained quite a bit of the details to us… I just don’t remember any of it. All I heard was… “another decompression surgery. Doesn’t look good.”
“Oh, God please… please don’t make my baby go through that again. Please… I’m begging you. Take me… just take me now… don’t mess with him anymore… he can’t take it. I can’t take it. Please. I’ll do anything.”
It is mostly a blur even now. Looking back and racking my brain does not bring back any of the memories of how we worked this all out. I just know that we were sent to see a pediatric neurosurgeon in Birmingham, Alabama that was to be moving to Atlanta in the fall. I liked him right off. He was calm and quiet and reassuring. He also said that he was very conservative with the knife. (Meaning he won’t do anything risky or unnecessary. That is good to know… since he’d be in my child’s brain!)
I asked him if he would take out the cyst. I wanted everything done and over-with. I didn’t want to ever have to put him through this again. But he calmly explained that he wouldn’t know if it was cancerous until he extracted some fluid from the cyst. If it was clear then he would leave it in there and we’ll hope that it shrinks. If it is cloudy…
We didn’t stay on that subject long.
But this wonderful doctor, (Doctor M), took the time to explain to us what he believed happened.
Here’s the gist of it:
On Gerrit’s first surgery, they patched his durra (the covering of the brain) with some form of Gortex. This is not an unusual thing. It is being used quite a bit now for such things. Apparently, Gerrit was allergic to or had a reaction to the Gortex patch. This caused his body to fight the fact that it was there, and try to get rid of it. Thus, the horrible time in the hospital after the first surgery, the high fevers, the continuing headaches, and then finally the scar tissue build up that created the pressure once again in his upper neck… that led to compression on his brain stem and cerebellum… which led to friction in the spinal column creating a syrinx, which led to needing another decompression surgery. Whew.
Here is a list of my questions taken right from my Gerrit/Chiari notebook:
How soon do we need to do surgery? SOON.
How do you know for sure if he is allergic to the Gortex patch? I don’t. And won’t ever know for sure, but now it doesn’t matter why… it just is. We will take it out anyway now.
What will you use if you can’t use Gortex? Some of his own tissue or swine tissue. (I just have to say here – because I will forget later – that they used swine tissue. So now, if you call him pig headed there is some truth to it!)
Are his continuing headaches a normal part of post surgery Chiari? No. Absolutely NOT.
Will it be a shorter or easier surgery? No. (He told us that Gerrit’s risk of being paralyzed was much greater this time. The surgery much harder, his chances much slimmer. His exact words at the end were… “I don’t like the odds.” - Not what you want to hear.)
What is the recovery time period expected? He didn’t want to venture a guess after our last experience!
Will you be taking anymore bone from his neck? Yes.
Will his low weight have any bearing on his recovery ability or time? Don’t think so.
Will he have to be on steroids again before surgery? No. We will administer them during the surgery.
He explained to us that the scar tissue is much harder to do surgery on than if he were going in for the first time. Much softer and easier to mistake where you are.
The doctor told us to go home, spend some good family time together, get some family photos taken and prepare yourselves that there is a good chance he will become paralyzed from the neck down if he does survive. He also told us to maybe have his type of blood donated from any of the family that was a match.
We went home.
Sad, but happy that we had a good, trustworthy doctor who took his time with us. Burdened with a heavy veil of grief, and yet given some hope. Emotional, and yet stronger than ever. Numb, and yet anxious to get it all over with. Worried, and yet trying to keep putting it all in Gods hands.
Arrangements were made. My mom came out from California this time, to stay with the other boys. We didn’t have a good car, so someone in our church loaned us theirs… with air-conditioning!! (I forgot to mention that in our previous visit to Birmingham we were loaned a car then also! Good people here at our little church! They didn’t even know us very long!)
My oldest son had just started his first week of sixth grade at a new school. This was his tenth school. He was not doing well, and this business of his cherished little brother and his mother leaving the state to go have brain surgery did not set well with him. We had a rough time ahead. We already knew from past experience that Darren took on responsibilities for things way beyond his control. He couldn’t fix this… and his frustration showed. It was hard to leave him.
It was very tough to leave baby JJ too. The poor little guy had had a very distracted mama for over a year now, and he was showing signs of it.
Dave and I took Gerrit to Birmingham on August 30, 1998. Nine months after his first decompression surgery.
As we came into Birmingham that night, Gerrit saw the lights of the city and said “See the city an the downtown?” It was his own cute little smartness… so special he was! He was so articulate at that age. He amazed us constantly.
Heading into the hospital early in the morning.
We arrived at Children’s Hospital at 6 am the next morning for check-in. Surgery was scheduled for 8 am.
At 7:30 the doctor came in and talked to us. He said we could cancel surgery and do another MRI if we wanted to. But that this needs to be done at some point… soon. We opted to go ahead and get it done.
We thought we were prepared. And we hoped we had made the right decision.
To be continued…