Saturday, May 29, 2010

The 411 on Room 635

Hello from Detroit!

So we are three days post op and it's been a roller coaster for sure!!

We weren't even ICU a full day, and we got moved to a general surg/ped floor
because the hospital is so full. The surgery went without any issues and was
about 7 1/2 hours long.

Since ICU we have run into a few issues. She was transfused on ICU, but her Hgb
is slowly coming back up. We have had some real drain issues. The morning in
ICU her EVD was filled with bright red blood so they went for urgent CT to see
if she had a bleed. Everything was post surg appropriate. That damn drain has
been nothing but issues!! She started vomiting in ICU, and when we got to the
floor by bed time she was vomiting " coffee grounds" so she was put on protonix
to treat for stress ulcers. Zofran was ordered as needed. With the coffee
ground issue arose another EVD issue, and what once was clearer CSF became all
blood again. So 2am urgent CT showed really nothing. Since yesterday she has
been leaking around one of her drains, presumably because a clot is in one( most
likely JP). I hear the word clot and freak because of her Factor V issues and
stroke!!! We had some BM issues as well.. She is chronically constipated from
the stroke and straining is a big issue (forgive the TMI). So ICP went nuts
after some result, and EVD went back to
bright red.

I am seeing a lot of twitchy movements, as well as a few seizure-y looking
things. We restarted her Vigab yesterday and she was started on Dilantin post
op. Every time she moves I freak because I don't know how much pain she is in,
was that a seizure or did she jus startle. Seizure waiting as you all know is
torture. And with her drains we have no EEG on sight so the plan is to stay on
the two meds an eventually add trileptal.

Currently she is getting the most and best sleep she has had post op. Yesterday
had to be exhausting for her. We had her out of bed twice so they could change
her bed ( she freaks out when you try to log roll her) so it was just easier
(and of course I wanted my baby!!). It brought back NICU all over again. I
was so afraid to touch her, I had a pillow under my arm, and she was so
uncomfortable at first. Then next thing you know she is pulling herself up from
a reclined position in my lap to sit up. Something she doesn't even really do
on good days! So she sat up looked around and started babbling .. Getting back
to herself. Then she promptly fell asleep. :) I love snuggles, even if I
couldn't snuggle her too right for fear of hurting her.

Neurosurg just popped in, saw she was sleeping and said they will be back for
the JP.

I think the night we were moved from ICU to the 6th floor the hospital
exhaustion/post traumatic hospital stress started to hit. Today I'm more
exhausted than surgery day. I have been doing rather well in the keeping it
together part. I lost it in ICU when I first saw her throw up and the pain she
was in. Yesterday she had a coughing spell and the look of terror and pain on
her face will forever be embedded in my
mind. So much so that I have begun second guessing myself ( or I was last
night). I texted Larry and asked him if I made a mistake by going a head with
surgery. He said this is all temporary and in the long run will be worth it.
After the look on her face yesterday I have doubt in the back of my mind.
Logical part of me knows we had to do it, but mommy part can't rationalize all
the pain she is in and how I put her there.

But enough negativity.. Today she is getting much needed rest, and I am grateful
for that. One more tube comes out today so that is great. And above all else..
I got a smile before they drew her six am labs. A real, big, toothy, very
lopsided now smile. What my heart has been longing for and needing!!

So we still have a few days with the EVD and then I am
not sure where we go from there. I kind of hope to be here doin in pt rehab,
but part of me wants to go home. Her EI therapists miss her so much, and home is
so quiet.. But pretty content out here. I'd move if I could. I love Dr
Chugani, Dr Asano, Dr Sood.. Some of the nurses have been outstanding !!
Others.. Eh..

And that is where we are at right now.

Thursday, May 27, 2010

Day 2 coming to a close.....

Sorry I've been off the Grid today guys.  Been in ICU most of the dealing with stuff, now on the floor so I can use my cell in her room.  Drainage issue is getting better, CSF is looking less bloody... Still having some vomit issues, but Zofran has been ordered already.  She just got Morphine a little while ago so she is resting comfortably.  Spiked a temp of 102 but it's back down on it's own to 100.5.

  I'm taking first overnight shift in case the docs need history etc, then I think we are going to alternate between the four of us.  So currently things are stable, still watching EVD drainage and temp, as well as for seizures.  Hard to tell with all the startling going on.  Dr C and Dr A stopped in as we were moving up to 6, plan is to keep Dilantin in house, reintroduce vigab when she starts taking PO anything ( ng has been mentioned if need be) then she will be on vigab and trileptal, with the plan to wean vigab over the next several months based off of EEG's.  I love my neuros, they are the super duo.

  I had the most traumatic experience yet earlier when i first saw her throw up, she reached up with her left hand and grabbed her bandages and let out the most horrific scream of pain.  I thought I was going to pass out.  I have never heard her scream like that. I immediately burst into tears.    I keep begging them to give her a suppository because I'm afraid if she tries to poop her ICP is going to be off the charts!!!  I've told everyone so far.  Her ICP is a big worry for me... Everytime she coughs ( or vomits) I freak.  She is sleeping well with occasional little sleepy moan noises.  

It's been a pretty long exhausting day.... More so than yesterday I think ( or yesterday is just catching up). Between the drainage scare, CT, and constipation issue I'm pretty pooped (ha. No pun). Ruth, one of Dr Chuganis nurses came down to go over some research paperwork with me and said " has anyone told you how good she looks?". We were like no.  She said " she looks really good. Granted, tomorrow we may have more swelling, but she looks great for immediately post op". Yay!!  My girl kicks surgical ass.  

So we have our own room which is nice, but we are on the 6th floor instead of 5th... And it's fairly noisy up here.  We were told to just let her do her own thing, don't try and wake her up or over stim her as the brain is still traumatized and learning to adjust.  So noisy floor doesn't thrill me too much but I've loved her nurses down here so far, and the pedi resident.  I called to report home to our pedi but missed his call at the end of his day because we were just about to leave ICU.  So he left me his cell in case I need him tonight.  And Dr C said he was going to pop in tomorrow morning and leave his cell because he is going away and " it's a long weekend" and if we need him he wants us to have his cell.  Have I mentioned I think I have the greatest drs in the world.  Dr Asano was a neurosurgeon in Japan, now he does more research here (he is a PhD and a freakin genius) he works very closely with Dr Chugani and is conducting a few studies right now.

I finally ventured out in the tunnell tonight and went to Wendys.  I wasn't that impressed.  And so much for not stress eating.  The executive chef at the Marriott where we are staying whipped up some chocolate mousse - y hazlenutty yumminess just for us because our room service angel Kamal and his manager Michele love the baby and have been ao incredibly kind to us.  They are incredible at the Ren Center Marriott.. I highly reccomend if coming to Detroit staying there.. It's well worth the money!!  So I think I blew my ww points for the month with thAt chocolate confection but it was worth it.

I'm dragging ass right now.  I don't want to go to bed cuz it's so early, but I'm really beat and really bored.  I can't get the tv to work at all so it's stuck on ESPN.  Ugh.  And I can't turn it off.  Oh well.  If that's all I have to complain about then it's a good night.

So I'll say adios for now.  I promise I'll fb update more tomorrow since we are no longer in ICU. Since froggie joined her in her new roo
she has picked him up and was whipping him around like she loves to do. So that is a very promising sign!!!


Wednesday, May 26, 2010

Dr Asano just stopped in, surgery is almost over, no major complications... we saw a picture he took of the hemisphere... Amazing. The whole middle area was missing. Dr Sood should be down about 430 to talk with us. Not sure if she needed a transfusion or not. And I had an amazing wonderful surprise! A lab mom who was in Detroit popped in to see us! My mom and I were blown away... She brought flowers ad yummy Italian pastries. Saratoga Hospital Lab you guys are the best!!! Xozoxox. Everyone just went to grab lunch... I'm kind of hanging by myself still trying to absorb. We probably won't get to see her til 630 or 7 when she gets to ICU. It's almost over (this part at least) I can't believe how fast it's actually gone by. I can't believe it's almost 4. I can't believe I just saw my childs brain. But I had to. I had to see for myself. Something that will never leave my memory.... But I'll never forget how that impacted the last year and a half. It's amazing how fast the day has gone. I was so worried about what I would do, how would I be during the wait.. but aside from some occasional tears ( and LOTS when I kisses her goodbye and watches as Larry carried her in back). I'm ok. Maybe cuz I'm
in denial, or compartmentalizing like usual.. or maybe it's the complete faith I have in her drs... But I'm ok. I'm sure when I see her poor swollen face I'll lose it.. But right now I'm ok. And ok isn't bad. I'm ok with ok.

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 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.

Saturday, May 15, 2010

I'm not sure what Garth Brooks was talking about....

Not that I haven't always had wonderful friends, and know that they have always had my back. But these last few weeks, these last few days in particular...I couldn't be more blessed than to know all of the wonderful people I know in life. From my lab moms, to the teachers at Slingerlands, my primary care dr, his nurse and office staff, friends I have known almost all of my life, to friends I have met who have become family to me since I started this journey called mommyhood. I don't say it enough...I don't write it enough...but you are ALL truly amazing. Each of you in your own way has touched my life, my childs life, or my family in a way that is truly wonderful. Some of you pop in from time to time to say hi, and check up on us. Some of you I talk to daily (or try to...I'm such a slacker lately) and listen while I vent and whine about the latest chaotic thing to go on in life. This is going to sound corny (but it's how my brain works) If I had to think of you all...I picture it like this in my's either one of two's the community outpouring saying "move that bus" as Ty shows a family their new life... or it's the Verizon dude with the network behind him. Because I as hit the thruway and head out of NY that is how I feel...that is the strength and the power I feel behind me. I have never had this kind of outpouring of support before. Frankly a lot of times it's so overwhelming to me I don't know how to handle it. But it's the unity, the strength, the kindness and caring keeping me up right now, making me able to walk my path toward Detroit. So if I mutter "nurse, move those bandages" they'll probably think I'm insane..but so be it. Because this is the start of a new chapter, a new life for Charli... and all of you are a part of it.

So I don't know what Garth was talking about..friends in low places...because from the way I see it.. you were all sent from above.

I hope you ALL know how much I love you.

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

Monday, May 3, 2010

23 days. But who's counting

It would seem like there should be another way of dealing with time in a situation like this. Instead of just sitting and letting time win out day after day. Making it so we are that much more closer to leaving, to a week of pre surg appointments, to meeting with neuro surg and setting up a game plan (if that is possible) It doesn't seem that time should be able to taunt one so much. My biggest issue with time is that there is never enough of it, and sometimes there is far too much to even be able to comprehend. I don't know for the life of me what I am going to do. How do I go downstairs and order a coffee (a really GOOD coffee mind you) but not have it looming over me that my child is upstairs in the OR right now, and they are removing HALF of her beautiful little brain. So maybe it doesnt work the way it should. I get that. It's causing her seizures most likely. But it is still her. It's her brain,her beautiful little brain. How do I sit and wait for them to come out and tell me hourly updates while they cut into my babies skull. My baby that I grew in my belly, and tried so hard for her to have the best pregnancy, and to be healthy. How do Iwait for that dr to come out of the OR and do the family talk thing. I'm losing it her. I need to have a plan. Bigbys for coffee, phone,listen to music, just sit and look out the window. My child is my life. She is everything to me. She is the single , by far, best thing I have ever done in my life. She is my everything. My hope, my inspiration, my love bug, she is everything to me. Nothing means more to mean that the health of that child. and Whatever we have to do to get her well, that is what we will do. I love her that much that I will put aside fears and go into this as hopeful and positive as I can be. Because I know my girl is strong. She fights her momma. I know she will kick some serious brain surgery seizure fighting ass. I just hope her momma can get thru the waiting without collapsing at the end of the day.