Three Of Us

Last Thursday, we took Alex to his appointment with the Chiari specialist in Orlando. This doctor is also a neurosurgeon. After the eight hours of MRIs, where Alex refused sedation. it was time to discuss cerebrospinal fluid blockage, arachnoid webs, cysts, and asymmetrical ventricles. I have far more knowledge of the brain than I ever thought necessary.

This doctor is Alex's 10th specialist that he has seen since October. We've met with so many different specialists, tested him for different diseases and problems, and discussed his symptoms. Yet chiari is the only problem we've found.
Alex's fluid blockage and cerebral tonsils looked the same as the prior MRI.
Once the MRI didn't show any remarkable changes, then the neurosurgeon discussed symptoms. Quality of life is taken into consideration as we discussed our notebook full of symptoms. Page after page lists gagging, dizziness, headaches, leg and foot pain, hand and arm pain, body weakness, neck pain, temperature regulation issues, screaming, and nose bleeds.
The neurosurgeon weighed the risks and benefits with us. Alex has a 50% chance of surgery working and a 10% risk of a leak after surgery with further complications. I was ready to walk out the door and continue seeking answers for him. But where would we go? We've seen every specialist recommended to us and the only other option is to wait a couple years to receive a blanket type diagnosis that simply means he has chronic pain and needs to continue with pain medication.
That's when the neurosurgeon looked at us and said, "if it was my child, I would do it." The possibility of regaining his quality of life outweighs the risks. We talked a little longer about a surgery date and the details. I asked him, in order to be sure, and so I could hear it again, "would you do this surgery if your child presented the same?" "Yes," he said.
At that moment I let a few tears escape because brain surgery is the answer though it doesn't feel quite right to hand another child over to have their skull cut open. I don't know how I will let my grip go or how I will trust that this stranger will take great care of my son.
In 16 days, that is what I will do. I will have faith in the doctor's training and experience. I will trust that my friends and family will rally with us. I will hold on to knowing that my son will come home without complications. I have to hold on to that because yesterday, Alex sat next to me crying. When he was able to speak, he told me that he was scared about getting an infection in his brain. I was able to comfort him and talk through his pain but the entire time, the nagging reality pulled at my heart. 

At the end of Alex's appointment, I told the doctor that I had an MRI a couple years ago. The neurologist thought that I had MS but I was cleared of it. I was diagnosed with fibromyalgia and sjogrens. While I was never comfortable with the diagnosis of fibromyalia, I had a diagnosis. I was glad to be done with testing and moved on with the fact that I could do little about my chronic pain.
The doctor asked to see my MRI, which was just a photo on my phone. It took a second for him to look at the MRI and I was diagnosed with chiari. Yep, there it is. I have chiari. The doctor wants me to get the disc with the MRI, make an appointment with a new neurologist, and then schedule an appointment with him to discuss surgery.
In an effort to compartmentalize my world, I haven't spoken about myself and my symptoms to many people. I have to concentrate on my children. However, several friends have asked me why I thought I had chiari. In some ways, my silence has been misleading.
Over two years ago, my pain got increasingly worse. It has been a strange road. Degenerative discs were found but no real reason for my pain. I tried pain medication that wasn't narcotic-based. I gained a lot of weight but didn't feel better. I was told to walk more, move more, and I would feel better but I didn't. I stopped taking the medication and the chronic pain has continued. 

I have migraines, neck pain, back pain, tingling hands and feet, and sore joints.  I get electrical type shock down my face and body.  I have hot flashes that aren't menopausal related.  I get dizzy and forget things easily.  Some days I can barely walk because it feels like my feet are enormous stumps.  There are numerous pains that come and go and aren't associated with extra weight or age.  

Just over a year ago, the pain was intense.  The ongoing pain caused depression that I haven't been able to overcome completely.   It's difficult to love life when your day is full of pain, even if I have a beautiful life.  I confided in a few people about what was going on, and spoke to my primary doctor.  Venting, crying, smiling through the pain but nothing really helped.  

Now I know that my brain is herniating into my spinal column.   No wonder I feel like crap.  I'll keep my brave face on for the world that doesn't care to see more but inside I am crumbling.  

Gabriel's Surgery

When Gabriel does things, he chooses to do them big.  This includes surgery.  Rather than tubes in his ears or adenoids removed, he has major brain surgery. 

The morning of July 15, Andrew carried Gabriel to the car at 5:15 am.  We have taken him to things in during the early morning hours and he simply slept in the car.  Instead, Gabriel told us that he was angry about being in the car at night time.  It was time to quit going so "forward-er" and go home.  It didn't take long before he told us that he didn't want to go the doctor's office. 

Given the situation, it took all my strength not to turn the car around and cancel his surgery time.  The few days before his surgery date, I stared at his beautiful head that didn't have a single mark on it. He would soon have a large incision in the middle of the back of his head.  

We continued to the hospital and upon arrival, I dropped Andrew and Gabriel off at the front doors while I parked the car.  Gabriel threw himself on the ground and yelled at us for bringing him to the hospital at night.  We managed to get to the second floor.  While I registered him, Andrew continued to de-escalate Gabriel.  Gabriel pulled hair, scratched Andrews face, and yelled.  I'm glad there was only one other family in the surgical area with us. 

The nurse called Gabriel to the pre-op room.  He was still angry that it was night time. The sweet staff attempted to calm him down and talked to us about everything.  When it came time to go back to surgery, the staff attempted every trick they knew to get him there 

They decided to skip protocol, dressed both of us for surgery, and Andrew and I escorted him down the hall.  When the operating room doors home, reality smacked me hard.  There were twelve nurses and doctors waiting to perform brain surgery on my baby.  

I held the tears in, somehow, as Gabriel jumped into the wagon. The anesthesiologist grabbed the mask as the three of us rubbed his arms and he calmly went to sleep.  The nurses move him to the bed and we kissed him good bye.  My lovely son awaited his surgery. 

The nurses escorted us out to te waiting room and told us that we did an excellent job with Gabriel.  The also said that most kids that anxious don't calm down like he did.  In a way that made me feel better 

Uncomfortably Numb

In two days we will be sitting in a hospital while our son has major surgery.  The benefits outweigh the risks and in my heart I know Gabriel will come out of this feeling better. I still struggle with the emotions and stress surrounding the situation. 

I've dealt with depression since I was a teenager  I am open about it but I don't tell everyone because depression still has a stigma.  Ive heard other people make comments about themselves or other people. They say things like, "if they would just get off their tush and do something, they will be fine."  "If they look at their blessings, they will see that their world isn't so bad."   These statements, while well intentioned, only isolate the person with depression more.  

I am numb.  With this numbness, I've been worried that I would have crippling depression and we do not have time for depression to hit with a furry right now.  Numb didn't seem to be the correct word.  I still feel things.  I just can't move or stop staring at my handsome little man cub.  Numb wasn't the right word at all 

Another Chiarian mom used the word paralyzed.  Yes, paralyzed is more appropriate.  I am paralyzed with fear.  I am scared out of my mind about the  uncertainty that lies in the days ahead.  I lack control the minute I give Gabriel a last hug and kiss on Tuesday morning.  

I also have a problem asking for help.  I'm a caregiver at heart. I want to help when I'm able to do so.  It's just who I am. Asking for help is a humbling experience for me and one that fills me with gratitude. It isn't easy because I don't want to inconvenience or take advantage of anyone.  I know I will never be able to repay everyone.  Honestly, I hope I will never see my friends in a situation where I will need to step in to help in the same way. 

We have had numerous offers for help for the next three weeks.   We have child care, meals, cleaning, grocery shopping, dog walks, child rides, hospital visits and more covered by our friends and community.  I have friends sending things from out of state.  I have offers for skype and even an offer to fly here. 

I didn't realize how loved we are here In Florida and across the states, until we had such a challenging event present itself.  Thank you for the prayers and the help.  We will never be able to express our gratitude enough.  

Major Surgery In One Week

Next week at this time, we will be preparing for major surgery. Gabriel has been scheduled for decompression surgery on July 15th at 7:30 am. We have to arrive an hour early.
I'm teetering between being numb and bursting into tears today. Neither one will help this situation or make it go away but I am an emotional wreck. The neurosurgeon said, "this is major surgery but it isn't as invasive as removing a tumor." It was meant to put everything in perspective for us but it makes the fact hit home that a stranger will be in my son's head, manipulating his brain.
The surgeon will remove the top vertebrae, part of his skull, and the cerebellum tonsils that are hanging into his neck. There is also a cyst that needs to be drained. The surgeon doesn't know if the cyst was mislabeled and he actually has hydrocephalus. So there's that - hydrocephalus - a buildup of fluid inside the skull that leads to brain swelling.
The recovery could take 2-5 days in the hospital. The surgeon said that children who aren't as complicated, medically and behaviorally as Gabriel, are usually there for two days. It will take a couple weeks until he feels like himself and then he will be completely recovered in six weeks, given no complications.
Please do not give me credit for handling this well or for having more strength than you can imagine. You would do the same thing I am doing and your heart would be breaking apart to bits as you watch your son today, knowing what he is facing in just over a week. You would take on the surgery yourself if it meant he didn't need to do it. You would need support and strength from people near and far. You would feel desperate and weak. You wouldn't be able explain the absolute fear that rocks you to your core when you consider brain surgery for your child.
Yet you would have hope that his quality of life would improve in six weeks. You are an adult and you have to slap a smile on in order to maintain some type of order in your household. You would feel grateful that there is something to relieve his symptoms, even if it isn't a cure. You would fail in your attempt to thank anyone who steps forward to help.
Put yourself in my shoes and think about how difficult it will be to hand my child, my firstborn "baby", over to a stranger next Tuesday so they can remove bone from his head. It could be you. I never thought this would be me. I'm sure most people aren't prepared for these things.

Update Letter to the School

Rather than write a new post, I am sharing the update letter I sent to the school staff.

As most of you know, Gabriel had an MRI and 24 hour EEG on Tuesday and Wednesday. He had a couple minor complications, making the procedures more challenging for him. We spent two full days in the PICU.
On Tuesday afternoon I received part of Gabriel's diagnosis from the MRI. While I was speaking to the PICU dr, the neurosurgeon happened to walk into the consultation room. It was good timing.
Gabriel has a brain malformation called Chiari type 1. Chiari is when the cerebellum (cerebellum tonsils) descends into the space where the spinal cord enters the spine. This causes pressure on the brainstem, cerebellum, or spinal cord.
Many people with Chiari type 1 don't show symptoms. However, Gabriel is showing active symptoms. These symptoms include: headaches, leg pain, arm weakness, hypotonia, poor sleeping, choking/gagging, balance issues, fine motor problems, aggression, and ear pain. The neurosurgeon told me that he thinks Gabriel is a candidate for surgery.
We have an appointment with the neurologist on the 24th to discuss all the results. We were also referred to the neurosurgeon on the 28th to discuss decompression surgery. The surgery involves removing a portion of the skull to relieve the pressure and might also include removal of the top vertebrae. The neurosurgeon also discussed shrinking the cerebellum with me.
Please feel free to ask any questions or contact us with any comments. This might be an issue that would be appropriate to share with staff so everyone can understand Gabriel. (I can't locate his OT's email to include her.) We would appreciate any school work sent home for him as we continue to work on his medical and education needs. We are grateful for your willingness to help Gabriel succeed.