For those who have been following Brennan's Journey.. we also have a go fund me page set up to help with medical expenses. If you would like to help Brennan out the link is www.gofundme.com/brennensjourney
We thank those that have donated to help Brennan out!
Monday, September 28, 2015
Here we go again.....
Well.. here we are at it again. We started another chapter to our Chiari journey last Thursday when went and visited with Dr. Frim, the Chiari Specialist in Chicago. The ride up there was llllooonnngggg and kind of boring until we hit the city limits. I have to admit.... I kind of got excited when we saw downtown in the distance until we took the turn to go to University of Chicago Hospital. All I have to say about the area is WOAH!!!!! Entering the building from the parking garage was kind of intimidating. It wasn't Cardinal Glennon. It was a real hospital.. Doctor's walking around in white coats... adults walking everywhere.. RN's in groups talking and walking with patients... I felt like I was seriously in an episode of Grey's Anatomy!!!! (My favorite show!) There were hardly any tiny humans running around!!! We went and grabbed a bite to eat and walked around just to see the place.. yes.. I did get lost!!!! Went over and scoped out Comer's Children's Hospital just to see what it was like. It is a huge facility but very, very nice!
We got to the appointment a little earlier and expected to have a long wait. It wasn't that bad. They called Brennan's name and my stomach which was in knots already was turning even more. I really wanted to throw up. We met Ashley, who was Dr. Frim's resident. She was going over questions and answers with us... going over both of his MRI's and the findings. She did ask a lot of questions regarding Brennan and what was going on with his health now. Showed us what they did on his MRI and what should have been done in the beginning. After all the questions and answers, she brought in Dr. Frim. I have to say, we were both impressed with him. I liked him a lot. He never once talked over us with medical terminology. He talked to Brennan on his level. There was things I learned with Chiari and things we knew about already. I can call him the 'Chiari God"... the man is very knowledgeable!
So after the conversation, physical examination and further review of the MRI's, we are now scheduled for another brain surgery Nov 2nd. It will be a very extensive surgery. Given the information, they will be cauterizing part of the brain out that is herniating out of his skull, cutting out more bone in the back of the head, shaving down more of his C1 vertebrae and opening up his dura sac all the way. Given that information, I wanted to throw up more. Just hearing the word "surgery" made my head spin more. Poor Brennan was freaking out... the poor kid has been through enough this year! He will be in the ICU for a couple of days then moved to another room until he is discharged from the hospital. I will be staying with him until he is discharged. Being a ways away from home.. I will not be looking forward to the ride home after surgery!
I have been asked.. "How do you feel about this?".. "I don't know how you do it?"... "Aren't you scared?"... To be honest.. I am feeling a mix of emotions.. I went into this doctor appointment with anxiety.. having a new doctor tell us his opinion.. the things that need to be done to slow down the progress of this. I am angry because it is robbing him of being a "normal" boy. I am scared for the unknown of the future of both his Chiari and Ehlers Danlos Syndrome. I am happy we found a doctor that "gets it". I am nervous for the surgery itself. I am stressed out from everything that has happened and is about to happen. I know there has been some tears lately and I am sure there will be more tears as the surgery date gets closer. No child should ever have to deal with this amount of pain and no parent should ever have to watch their child in that much pain and struggle with the little things. I look at B and ask "why.. why him".. one of the most lovable kids I have met. He doesn't know a stranger and is always smiling and pushing through pain.
We ask that you continue to keep Brennan in prayers and thoughts. This has definitely been a long road for him. Nov 2nd...a new chapter begins....
We got to the appointment a little earlier and expected to have a long wait. It wasn't that bad. They called Brennan's name and my stomach which was in knots already was turning even more. I really wanted to throw up. We met Ashley, who was Dr. Frim's resident. She was going over questions and answers with us... going over both of his MRI's and the findings. She did ask a lot of questions regarding Brennan and what was going on with his health now. Showed us what they did on his MRI and what should have been done in the beginning. After all the questions and answers, she brought in Dr. Frim. I have to say, we were both impressed with him. I liked him a lot. He never once talked over us with medical terminology. He talked to Brennan on his level. There was things I learned with Chiari and things we knew about already. I can call him the 'Chiari God"... the man is very knowledgeable!
So after the conversation, physical examination and further review of the MRI's, we are now scheduled for another brain surgery Nov 2nd. It will be a very extensive surgery. Given the information, they will be cauterizing part of the brain out that is herniating out of his skull, cutting out more bone in the back of the head, shaving down more of his C1 vertebrae and opening up his dura sac all the way. Given that information, I wanted to throw up more. Just hearing the word "surgery" made my head spin more. Poor Brennan was freaking out... the poor kid has been through enough this year! He will be in the ICU for a couple of days then moved to another room until he is discharged from the hospital. I will be staying with him until he is discharged. Being a ways away from home.. I will not be looking forward to the ride home after surgery!
I have been asked.. "How do you feel about this?".. "I don't know how you do it?"... "Aren't you scared?"... To be honest.. I am feeling a mix of emotions.. I went into this doctor appointment with anxiety.. having a new doctor tell us his opinion.. the things that need to be done to slow down the progress of this. I am angry because it is robbing him of being a "normal" boy. I am scared for the unknown of the future of both his Chiari and Ehlers Danlos Syndrome. I am happy we found a doctor that "gets it". I am nervous for the surgery itself. I am stressed out from everything that has happened and is about to happen. I know there has been some tears lately and I am sure there will be more tears as the surgery date gets closer. No child should ever have to deal with this amount of pain and no parent should ever have to watch their child in that much pain and struggle with the little things. I look at B and ask "why.. why him".. one of the most lovable kids I have met. He doesn't know a stranger and is always smiling and pushing through pain.
We ask that you continue to keep Brennan in prayers and thoughts. This has definitely been a long road for him. Nov 2nd...a new chapter begins....
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