Gare-Bear Part III

The following week we had the CAT scan. Anyone who has had their baby put to sleep for any procedure knows how much stress that is on the parents. It’s hard, but worth going through if they can fix your baby.

That night the doctors office called us and said we had to go back in the next day for a MRI. They found a mass and wanted a closer look. We were at least making progress in finding out what was wrong… but that was not really what a parent wants to hear.

We were so scared that night.

Being only 2 1/2 they had to sedate him for the CAT and the MRI. They also ran a dye through him to get a better or clearer picture of his brain this time. While we were waiting for him to wake up, the Radiologist told us to stay put, that they had called down a Pediatric Neurosurgeon to come and talk to us. He was in the middle of a surgery, so we would have to wait.

Our world stopped.

I really mean stopped. Nothing mattered anymore. Nothing. Life as we knew it was no more. We felt sure that he had a brain tumor and we were going to loose him. All we could do was to hold each other and cry. We cried for so long that I thought my face would explode from puffiness. My husband just held his little hand and wept.

The Radiologist had mercy on us and came in the room and shut the door. She said she was not supposed to do this, but seeing us like this was killing her. She said “I know you think it’s a brain tumor, but it’s not. I just want you to know that.” She left, and it may have given us a little hope, but not much. She was very kind to try though, and bless her for that.

It was an exhausting wait, but when the doctor finally came, he explained to us that Gerrit had Arnold-Chiari Malformation. (Type II Chiari) I had never heard of it before.

The doctor asked us a lot of questions, and we in turn asked him a lot. The one thing he could not figure out, was how we found this, and with the only symptom being headaches. As far as he knew, it had not been found with that being the only symptom before. He said most kids that have Chiari this severe have a host of other complications, like trouble swallowing, falling a lot, trouble holding onto things, and even some developmental issues or spine-abifida. The doctor said that as impacted as it was in there, he could stop breathing at any moment due to the pressure being put on the brain stem. Which in fact tells you to breath. We were to schedule decompression surgery as soon as possible.

We drove home numb.

Being as we had just moved out to Georgia, and all our family and friends were back west, we didn’t have the foggiest idea how we were going to do this. We had a 10 1/2 month old and a 10 year old at home to consider.

Bud & JJ 2-98

Bud & Baby JJ 2-98

The next few days are still a blur to me. I don’t really know how we got it all worked out, but we did, thanks to wonderful family and friends who flew out to take turns watching the boys! (Uncle Eddie, Aunt Carol and Auntie-Thank you!) And the little church that we had visited once or twice, came to us with food, prayers, support and love like I have NEVER seen before. They were a God send! Thank you PTC SDA Church family!

They had put him on several drugs to get him ready for the surgery. One of them was a steroid. His little face was so swollen. We knew he could feel the anxiety in the air, as much as we tried our best to stifle it. We were all nervous. We didn’t know much about what he had, let alone how bad his was.

The day before surgery

The day before surgery

We had watched him constantly since seeing the surgeon. His crib was moved into our room, and we never let him out of our site. We were on high alert. We also didn’t get much sleep – as you can well imagine. But one week later…

It was the day before Thanksgiving 1998 and Gerrit was exactly two and a half years old.

We headed to the hospital.

to be continued…

One response to “Gare-Bear Part III

  1. Anonymous

    Your mother’s love and determination to help Gerrit no matter what the obstacles, pretty much saved his life – You are a wonderful wonderful mom, Heidi!!! This story is fascinating! Still reading!

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