Gare-Bear Part VIII

(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.

Thank you,

hi-d

Added Note (12-08):

Gerrit is fine, I just wanted to add this photo of his neck we took today.

dec08-f-002

As you can see he likes his hair long to cover up the scarr, but it really isn’t that bad considering!

10 responses to “Gare-Bear Part VIII

  1. I just found your site! What an amazing story! I am so thankful for you and your child. I am also thankful that you shared this with us.

    God is good, and all is right with the world.

    Linda

    http://coloradofarmlife.wordpress.com

  2. Hi, My name is Tara and my son is three. He has Chiari also. He is at the other end of the spectrum when it comes to sensitivity- it takes a lot of stimulation to get him interested in anything. He has not had surgery. One day I hope he can talk, and be as smart as your boy. Right now we are in limbo- don’t know if he mentally disabled, or just disabled by the Chiari…
    thanks for giving me hope!
    Tara

  3. HI-D,

    Thanks so much for sharing your story. We are a year down the road from our 1st Chiari Decompression surgery and still having trouble. The surgeon’s concern goes from urgent to not a big deal almost in the same breath. On our last visit he politely told me to ‘start chewing tobacco or something’ i.e. … get a hobby. Some days I do feel like I am on ‘Mom Crack’ and hooked to this obsession of subjecting my son to painful testing… then I take a deep breath, hold my chin up, say a prayer, read a story like yours and say to myself …’There is nothing I want more than to be proven guilty of looking for problems where there are not any problems … nothing would please me more than to be wrong… SO tell me to stop worrying if you dare and I will simply smile politely and say to you …. You are not MOTHER! Please just do YOUR job as well as I am doing mine!’

  4. This is amazing and great! Wonderful. You must be so relieved and happy. :)

  5. Jenna

    Thank you for your story. I recently took my 8 month old daughter in for an MRI (and I totally understand about the scariness of putting your child to sleep for tests) because she had been having seizures. The pediatrician called and said she saw no reason for the seizures but that she has a chiari malformation and didn’t expand upon that. I have to take her to a neurologist in two weeks to read the results and get some more tests so I guess he will explain more about her condition to me. I have been reading up on all the information I can find on the internet, and I am glad that I found your story. Thank you for sharing. I am glad things ended up well for you and your family.

  6. Vickie

    What an uplifting story and what a lovely young man you have there. Thanks for sharing this story. My sons and daughter are all grown up now, but there are other young families out there that will benefit from your story. We can ALL appreciate and be thankful to God for His divine intervention and the answers to prayer. I’m so thankful for your happy ending. God bless your family -

  7. I have chiari malformation it took 3 years to get help i live in a small town unaware of chiari malformation unaware to talk about it. I was at the point of not walking when a wonderful doctor listened the mri 2 mind you was not what he found when he opened me up it was much worse. I went to mass general hospitol in boston mass to a neuosurgeon named dr jean valery coumans he listened he helped. For anyone who cant get help please try him he is kind and will do his best to help. Im trying to get word out about this man please help if you can I want to help others who cant get help like I couldnt. Thank-you

  8. Hello Heidi:

    I want you to know I read your entire blog and was very moved. You and your family have been to hell and back! I am happy Gerrit made it through the operations. Thank you for sharing your experience. I enjoyed reading your accounting of the most difficult time you went through! I’ve been through my own hell and nobody knows what it is like to suffer so. However, now that I’ve read this, I know you to know how it feels to cry and cry and cry until you don’t think there is another tear left. God was good to you and your family for He spared you the ultimate pain and sorrow of losing your precious child. Thank you for providing me the link. Karla

  9. ZipperedZebra

    Heidi:

    Your story was intriguing and heartening. I’m glad that Gerrit is doing well. Thank you for believing him when he said he was in pain, and for searching until you found someone to help him.

    I wonder if anyone has told you this yet –> researchers have discovered that about 13% of all Chiarians have an underlying inherited collagen disorder such as Ehlers-Danlos syndrome (EDS)that makes their connective tissue fragile, sometimes stretchy, and often prone to scarring.

    Your son’s experience after his first surgery and his photos on your blog make me think he could have this condition. If so, it would explain a lot about why he maintained a syrinx after decompression, and why he rejected the gore-tex dura patch, why he continued to have pain, and why he needed a second attempt at a posterior fossa decompression. It also would explain why the docs have told you to keep him away from contact sports and whiplash injuries.

    If you are curious, you can learn more about EDS from the experts who have researched it. The world’s top EDS expert happens to be not too far from your state (she’s in Baltimore.) You can learn more online, too, at the website maintained by the Ehlers-Danlos National Foundation at www. ednf .org. (close the spaces)

    Also I’d like to recommend an online group that has many members whose stories are very similar to yours. It’s the parent subgroup from Chiari Connection International, found online at Chiari Connection International.com (close the spaces) and can be joined through Yahoo groups. It’s good to know other people who are walking the same path.

    I hope these resources are useful to you. They have been really helpful for my family — we have the combination of Chiari, syringomyelia, tethered spinal cord, and Ehlers-Danlos syndrome. As you know, it’s a lifelong road, so it’s good to have an accurate map and good traveling companions.

    I wish you all the best!

  10. What an amazing story! You could certainly write a book about it…or maybe you have! It’s so good that you kept on seeking help, researching and praying to the Lord. What an inspiration!

    hi-d (too)

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