(To catch up to this part VIII installment, see the Gare-Bare pages I-VII to the right.)
Dave and I took Gerrit to Birmingham on August 30, 1998. Nine months after his first decompression surgery.
*Correction: August 30, 1999 – oops!
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.
August 31, 1999. 10:15 A.M. Doctor M came into the room. A big smile on his face.
I can not describe for you the relief I felt. I knew that he was happy with what he found and that my baby was going to be okay. I will always love that man for what he did. He told us that there was a significant amount of scar tissue and he used “swine” tissue to patch the durra. He only lost 15cc of blood and the best part… the fluid he extracted from the cyst… was crystal clear!!! (He sent it to the lab anyway, just to be sure.) But we were very happy. He survived the surgery, and the cyst did not appear to be cancerous!
Thank you Jesus!
At 12:30 we finally got to see him in ICU. He was still on oxygen, and as we examined him (like parents do) we saw an owie on both sides of his head. The nurse explained that that is where they had to put pins in his head to stabilize it. Wow. It was truly a touchy surgery if they had to do that, I remember thinking.
At 1:40 Doctor M and his assistant came to check on him. He gave him a good report and said he could eat whatever he wanted when he woke up! His color looked good and he was responding well to stimulus although he slept quite a bit that first day.
He threw up that evening, and when they turned him over to lay on his other side, he got pretty upset and even though he didn’t open his eyes, he said very clearly, “I want to go home”.
Gerrit decided that he wouldn’t eat or drink until we got home! He kept telling the nurses that he would drink later… eat later… when he got home! They kept trying to tell him that he wouldn’t get to go home unless he ate and drank. It was a battle for sure – but the nurses eventually won! Although he didn’t consume much. Maybe two grapes and a bite of muffin at a time.
He tried to ignore all that was going on around him the first couple of days. The nurses said it seemed like he was just going to sleep until this was all over and he could go home! But, we found out that it was not because he was ignoring us that he kept his eyes shut, but the next time Doctor M came in to see Gerrit, he explained that the area of his brain that deals with the retina is still not stable and it hurts to have any light in his eyes. Some blood got into the spinal fluid which makes the retinas very sensitive.
He finally got moved out of ICU and into a regular room in the evening of September 2. He was starting to eat a little and kept his eyes open more often. He grimaced a lot… and seemed to have some neck spasms, but the nurses were very good at keeping him up on the morphine if I let them know he was hurting.
He eventually was able to sit in the chair and that made him much happier! He asked me to draw pictures for him over and over again! They are all over my notebook! Sharks, trucks, cars, limousines (“loomuzeens”) and dinosaurs!
I will not give you all the gory details of his next three days in the hospital. It was up and down – good moments and bad – but it was a far cry better than the last experience.
But I will tell you what Doctor M told me about all the scaring from the last surgery. I asked if he thought the scaring was really from the gortex patch that they gave him the last time (since that is what we were told) and he said that there had been a very significant infection (inflammation) that created a great deal of scar tissue. He said he couldn’t really say if it was the gortex or not, but that something happened… something not good… something so not good that it made him that sick after the surgery. He said that he has never had a child that sick after decompression surgery… so he doesn’t know what could have caused it.
Gerrit was released on September 5, 1999.
He got to go home!
We are very blessed that Gerrit survived that first surgery, let alone the second. I have a gut feeling that something may have happened in that first surgery that they did not tell us about. I guess I will never know.
But, we have much to be thankful for!
He was very stiff for a long time afterwards, and he continues to have sensitive eyes. He is not allowed to play any contact sports or jump on a trampoline, pogo stick or anything like that with any continues head extension. He has to make sure that he gets a seat in the car with a head rest – a simple rear ended accident could be fatal for him. He will never experience a roller coaster… bumper cars, football, baseball, soccer, skateboarding or even volleyball… but you know what? There is SO much of life out there that he CAN do!!!
He is alive!
Life is good!
4 weeks after 2nd surgery
Gerrit is now a 12 (as of May 08) year old young man. He has MRI’s on a regular basis, but they have all been wonderful. The cyst has softened up and is allowing fluid to go around it well enough. He is a straight A student and has almost a photographic memory! He is a miracle and a joy to have around!!
Thank you Jesus!!
Gerrit today! Nine years after he came home from his second surgery!
It is my hope and prayer that this story is an inspiration to all the parents out there that have a medically fragile child. Or even someone who thinks something may be wrong with their child. Remember – there is no doctor out there that knows your child better than you. Yes, the doctors can fix the problem a good percentage of the time, but they don’t always have the patience to find the problem. Keep on it. Push and push until you get answers. You may save your child’s life!
Thank you to all the people who prayed for my little Gare-Bear back in 1998 and 1999. You were a special part of this miracle! Based on what I have read, with the severity of compaction that he had… he shouldn’t have lived to see two years old.
Added Note (12-08):
Gerrit is fine, I just wanted to add this photo of his neck we took today.
As you can see he likes his hair long to cover up the scarr, but it really isn’t that bad considering!