Friday, May 14, 2010

Hemi's have more power.

So, here I sit, yet again procrastinating my packing to leave Sunday morning for Detroit, for what will be the most life changing event ever. Her's a little recap just in case you've missed the last 22 months.

July 1 2008 after a hell of a labor and urgent C section the world welcomed my little angel Charlotte Hayes Gill. Within a few hours she was in the NICU with a pulmonary hemorrhage, on a vent, and having what they thought were seizures. Subsequent EEG's would show (first, little to no normal brain activity and then marked improvement but still many abnormalities and slowing). But no seizures. It was determined by MRI July 8 that Charlotte had a bi lateral middle cerebral artery infarct (big words for stroke). After reeling from the devastation that our baby had suffered a stroke, we began to settle in to life a bit.

Not for long. The day after Christmas Charli received her 6 month vaccinations and hours later went into a complex partial seizure, became post ictal, and upon waking up started what would be the first of what I can only imagine as thousands of spasms by now. At the end of that month my husband Larry had a spontaneous right carotid artery dissection and also had a stroke. Needless to say my family keeps me on my toes. EEG on Charli on January 7th revealed what I knew in the pit of my stomach all along. Infantile Spams with hypsarrythmia. A rare, catastrophic, devastating form of epilepsy.

Since January 2009 we've tried Phenobarb, Depekene, Zonegran, Topomax, ACTH, Keppra, Vigabatrin , Klonopin (her three current meds). During the past year we have had numerous trips to the ER via ambulance because of prolonged clusters of spasms, Generalized Tonic Clonic seizures, Status Epilepticus (or Status) and a plethora of other things including work ups for vascular anomalies because of bi lateral discoloration in her legs in the dependent sitting position, Pulmonary follow ups for R lower lobe atelectasis with a sub pleural bleb, Cardiology follow ups for a functional heart murmur, and for what was seen on a thoracic MRA as a possible aortic dissection where we didn't know for 18 LONG agonizing hours in the ER if she was going to go at any minute. We still haven't quite cleared all of that up, but it wasn't a dissection thankfully.

We've been to Philly for stroke follow up, Boston for eyes, NYU for seizures, and now we are headed what I refer to as Detroit. To be in the hands of Dr Chugani and Dr. Sood, and for what will be the beginning of the best next chapter in Charli's life. After failing so many meds, and countless amount of research hours I've put in and mommy networking (thanks D ) ;) We landed ourselves in the Detroit Medical Center....home to Detroit Childrens hospital. After meeting with Dr C (or the Rockstar as we call him in the IS world) and Dr Velagabhanti (his fellow whom I ADORE) and going over VEEG results and results of her PET scan done was determined that she is a perfect surgical candidate. Her stroke left her with basically little to no activity on her left side...except for two hypometabolic areas in her frontal and occipital lobes. Dr C thinks these are seizure culprits and are not allowing the right hemisphere to full take over the left side functions. We know that her right side has in fact taken over left side functions because she has speech (jargoning, babbling, 3 words...with maybe a forth on its way TRACEY!!) For a child with no language area (Broca's and Weirnekes) that is pretty damn impressive.

So, the plan. Monday we see Hematology because she needs to be followed because she is Factor V Leiden positive (which means she is hypercoaguable) and she may need coag therapy. Tuesday we have a new MRI Diffusion Tensor Imaging done to look more closely at the motor tracts in the left hemi to see if there is any activity. Wednesday with meet with Dr. C. Thur and Fri I think I may either sleep or drink myself into oblivion. Kidding. We might take in the zoo if the weather is kind to us. (open air good, closed contained environment bad!!) Then Monday the 24th we meet Dr Sood for the first time and have our Neuro Surg consult. Then the big day. Wednesday, May 26th. I kind of peeked ahead in a prayer book I got from a friend of my moms...and that days psalm is John 10:11-18 I am the good shepherd. The good shepherd lays down his life for the sheep. Lord Jesus, thank you for being my Good Shepherd to watch over me and give me what I need most. Amen God gave me what I needed most in life. My reason to live, breathe, fight, smile, love, laugh. My daughter. He also gave me a chance to meet people along my journey who have become kindred spirits, really family to me...who share my fears, inner most dark thoughts, joys, sorrows, tears, smiles. He gave me my daughter because she needed me. And I needed her. And I have stopped at nothing to get her the best care since the day she was born...and I will continue to do so for the rest of my life. I know Charli is an angel among us. You can see it in her eyes, the way they twinkle. The way she scrunches up her nose and smiles. The way she rolls over and throws her strong arm around my next and gives me squeezies (which I think is her learning how to hug). She is my reason for living. She was my path chosen and laid out before me. And I gladly walk this path. I might stumble, and fall, and lag behind at times feeling sorry for myself, but the light at the end of the tunnel is coming. So I will walk strongly, my head held high, carrying my daughter into the pre op room, knowing that when she goes away it's going to kill me, but when she comes back my little girl will be better than ever. I know this to be true, because I have so many of you out there praying for us, pulling for us, and I have more faith in my daughter than anything that she will come out kicking IS ass.

These last few months have been hell. I am not going to lie. As some of you know my husband and I have split up, but we are bonded as a team to fight for Charli and her well being. Unfortunately stress from medical crisis after medical crisis takes a toll on a marriage. It's been a roller coaster of emotions, illness, dr's appointments, traveling, lost cats, adopting epileptic dogs, cars name it, it's happened. But this Sunday, as I drive in to Detroit (rollin up listening to Eminem of course) I know that Detroit will be the place that miracles happen. I've seen it, I know it to be true, and we will be among those miracles. So for those of you who pray...please continue to say prayers for come thru her surgery, to have strength to recover quickly, for the seizure monster to be slayed and gone forever. And please pray for her family, to have the strength to wait the agonizing long hours in that surgical waiting room, to find some peace in knowing that not only is she in the hands of 2 brilliant dr's, but God is protecting his little lamb. To not get sick on the dozens of Bigbys coffee's I intend to drink (had to make ya'll smile!!) And for those of you who dont pray, maybe just think of that day. As you go about your day, and see the sun shining, or a butterfly, or a beautiful flower, think of my beautiful daughter..and wish her well.

I hope you know how much I love all of you. You are all amazing, I don't know what I would do without some of you (HEATHER, JEN, TARA, DANIELLE, AMY) so many people to list...who mean so much, and are in my heart forever...because of a common bond we all share in one way or another. We are moms (and dads) we love our kids. And we fight. Always. For them. For all of them.

I intend on making regular fb updates, as well as trying to update my blog from out stay tuned. I'm sure you'll get some good five hour energy ramblings from me in the next few days ;o)
HOPE in one hemisphere
Post Surgery Hat Fashion Show

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