Tuesday, May 25, 2010

Not just Hockeytown, it's where the man has all the power

No... I'm not talking about God, although technically he is the man with all the power usually. But yesterday I met God, in the form of a miracle worker neurosurgeon named Dr Sood. He is my God, because tomorrow my childs life will literally be in his hands. He has the power to change the course of all of our lives. To drastically change Charlis. From seizures all day long... Which have transitioned into prolonged tonics that scare her and she cries after them... To what he told us yesterday..."95% chance for seizure freedom". 95%. That's right... Ninety-five freakin percent. Seizure freedom. The best words in the world. Words that I dreamed of since I heard the words " she has hypsarrythmia with infantile spasms".

I have met a lot of Dr's in my day. I worked for some of the best pulmonary and critical care dr's in our area (probably anywhere). I have bumped heads with ER docs drawing bloods, run into cardio guys in ICU, had docs pop in the lab to read cultures or gram stains or whatever. I have met the most amazing pediatric dr's since Charli was born. Her pedi is a gift from God I am certain. Her cardiologist is wonderful. All of her neuros are great. But here, in Detroit, I think I may have found the two men who will undoubtedly be changing my daughters life for the better, and that my eternal gratitude will not be enough to ever thank them... For giving us a chance.. For giving HER a chance.. At a life with no seizures, no meds someday. A chance to sit, stand, walk, talk ( which Dr C says she will be doing more of 6 months post surg).

I've met a lot of dr's, and admired many, and disliked many, and there a few who if not for them I wouldn't be who I am, have the knowledge I do.. Which has helped me help my daughter. Never have I met dr's like these two before. Maybe because I hold them in such high regard because they are the ones who are about to shape my daughters life into a life with 95% chance no seizures. Dr C I knew a little before I met him. We had exchanged a few emails before we came out here. But Dr Sood. No idea what to expect. He is a neuro surgeon for Gods sake. Specialist. Top of his game. In my experience surgeons are rather cut and dry ( bad pun) kind of no nonsense... Get in get out let's get to the next case. Dr Sood walked in and this kind, gentle man said hello to Charlotte and began asking me questions about her history. Then he started discussing surgery. 6-8 hours probably, unless Thebes is an issue or she needs a transfusion then it could be more like 10. " did you see the MRI" he asked me. I replied " the DTI? no, Dr Chugani had not seen it when I saw him" he said " I will show you" so we started talking about surgery again. 95% chance of seizure freedom. And not cocky, like surgeons can be. He (and Dr C) have a confidence about them that is contagious. It's magical. I wasn't nervous, or scared talking to him. I felt calm, confident, optimistic. We talked about the DTI, and her right sided motor functions. He asked me how her movement was... I told him what she was able to do. He waved his hand and said " I'm not worried at all about her leg... That will be fine and all come back. Her arm, she can lift it?" I said yes. He said "that will come back as well". Her hand.... Different story. She has no volitional control over her hand. No dexterity. Never has. But he said "sometimes with surgery you can gain movement. It's very hard to say, but there are cases where it has happened." ok once again good news.

He mentioned that there is always a possibility with surgery that at the site a clot can form. My biggest fear. Charli is Factor V Leiden positive.. Meaning she is prone to clots (hypercoaguable) he said if that were to happen then they would go back in and remove it. He also said in all of his surgeries ( and I don't know his numbers) but he said it is very rare. We spoke about my appointment with heme an what Dr Chitlur said...and agreed no intervention was needed right now.

We spoke about some other stuff.. Mostly a blur because at this point my brain was spinning, tears already in my eyes.. Looking at my beautiful girl kicking away on the exam table.. Knowing in two days we are about to do the hardest most horrible thing ever but also the best and most wonderful thing ever. Because of two Dr's in Detroit who have made it their lifes work to help make miracles happen. Now I know the odds, I know the numbers game... Nothing is ever a gaurantee, but 95%.. how could I not be excited, optimistic . Then he said he'd be right back. When he returned he said ". Come on mom ... Dad you too." He walked us around the corner to a screen with my babies brain on it. I've seen her MRI's before, and her PET. But never a scan this clear. Immediately I saw the two areas.. The frontal and occipital areas that are hypometabolic on her PET. As clear as day. And I saw the black. The darkness that was once healthy tissue, that was destroyed by her stroke. ( middle cerebral artery infarction if you want to be specific). Those two little areas, trying to grow and develop... With no presence of middle lobe tissue.... They became irritable. Hyperexcitable. Seizures. Larry asked something about what he was looking at, and not thinking I just kind of blurted out " no, that's her ventricle , the rest is ex vacuo" (fluid from cell loss) Dr Sood looked at me and said " nice! You've certainly done your homework". Kind of nice coming from a famous surgeon. Looking at her MRI was once again clarification ...like seeing her PET that this is the right thing to do. I started getting teary again becaue he also said "and here is her right hemisphere, normal.". We've never head that about her right side before. Buy you could see it. No darkness. A few little white areas, but no darkness. Normal. Dr sood feels that most likely because there is no presence of motor tracts on the left hemisphere her right has picked her motor. Which means we may see less impairment. MAYBE. But it will be easier for her to regain function because of this. So as I tried to
Take this all in, head spinning, teary blob, Dr Sood put his arm around me and gave me a hug and said "it's going to be alright mom, she's going to be great". I don't think I remember much after that. I don't really need to. Because it is going to be alright. She is great, and she will be better than great after this. She will be my beautiful amazing little fighter, seizure free.. Ready to take on recovery and therapy...ready to take on the world. All because a Dr in Detroit answered a desperate moms email, and set in motion the next chapter of our lives... Which wouldn't be possible if not for Detroit Medical Center/ Detroit Childrens, Dr Chugani and Dr Sood. Miracles do happen, and Detroit is the Rock City... Rockstar dr's and rockstar hospital staff. Detroit for all of it's flaws, will forever be my favorite place in the world.


The Jacob Fund said...

We hope to be as brave. God bless.

Sophie's Story by Elaine said...

My daughter (Charlotte Sophia...but we call her Sophie) had a left subtotal hemispherectomy on May 29, 2009 in Detroit. My heart goes out to you. Because even though you know this is the right thing for your daughter, it is one of the hardest decisions to make. She is in amazing hands which you already know. I will be following and thinking of you all. I am here for you if you need anything. It is crazy how connected I feel to you even though this is the first time I came across your blog (from Danielle).

sten1971 said...

So glad to read the post this morning. Lots of thought and prayers are headed your way.

Lisa said...

My daughter Julia had surgery with Dr. Sood last September. It was the hardest thing I've ever been through but so completely worth it. Her life is better now in every imaginable way...and 8 months out from surgery she is seizure free. He is such an amazing man. Your little girl is in the best possible hands. Trust in that when the times get hard and you are exhausted. I will follow along as well, take care.