A roller coaster of a day...

First, I wanted to post some additional pictures of yesterday...

I am referencing this post "today" as in Sunday even though it is technically Monday (12:15am). To not keep everyone on their toes, I will begin by saying...ANOTHER DAY WITH NO SEIZURES. I'm loving this one day at a time approach. And I'm really loving the new things I get to count!!! And I'm REALLY loving the things I no longer have to count!!!

Today has been quite different than yesterday. Dr. Chugani's chief resident came in to talk with us this morning. He warned us that Day 3 post-op would be the worst. They are always right. She would be the most lethargic today, which is good, because it means the brain is healing...it has to bottom out before it gets better. She is more swollen today than yesterday...barely able to open her right eye. Even though we still had some milestone moments today, today was emotionally draining. For most of the day, Sophie was very lethargic. Not wanting to speak. Not wanting to sit up. She was limp. Almost lifeless. Every once in awhile she would peek at us with her left eye.

They took her wrap off today. If you want to see close up pictures, you can go to my other blog page. They also took out her JP drain. It was a bit painful. She was due for pain medication and usually they warn the nurse a half hour before but they didn't. She was brave though and it was fairly quick. She immediately got a dose of tylenol with codeine and feel asleep.

Later this afternoon, I felt brave enough to hold her. It was an emotional moment on many levels. It felt so good to have her in my arms but she wasn't there. Her body was so heavy. It was hard to hold her. She still has an IV in her right arm, drain from her head and pulse ox on her big toe...so just the logistics of juggling that was hard enough without the fear of worrying about the stitches in her head. It was so unnatural. She has absolutely no head control. Her body was limp. She looked uncomfortable. I am sure she felt uncomfortable. Her safe haven was no longer her safe haven. Our snuggle time was over within minutes when she projectile vomited all over the two of us.

I didn't think she would be like this. I wasn't expecting her to lose all her tone and not be able to sit up. I think she only said one word today...juice. I can't remember her saying anything else.

She did have a big moment late this evening. As I was comforting her, she grabbed my hair with her left hand and slowly put her right thumb in her mouth. It was a moment. I cried. I never thought I would cry seeing my baby girl suck her thumb. But then her monitor starting beeping. The IV in the crook of her right arm was being crimped. So that was the end of that. I pleaded with the anesthesiologist not to put anything in that arm. He understood...he had a 6 year old that still sucked her thumb. But with just having surgery a few days before and the need to start new IVs (for both surgeries, she had 2 IVs in and one arterial line), they had to go there. I even saw where they tried to stick her in other places but I guess those veins just wouldn't hold.

She vomited once more this evening. She has been able to drink some juice throughout the day. She was on an as needed dose of Reglan and Zofran but she is now getting that on a regular basis.

Her current meds are as follows (all in IV form except tylenol with codeine): 75mg of Depakote every 6 hours, 40mg of Dilantin every 12 hours, 1.5mg of Zofran every 8 hours, 1.5mg of Reglan every 6 hours, an antibiotic every 8 hours and 24mg of Tylenol with codeine every 4 hours on an as needed basis. She had to get a bolus of Depakote and Dilantin this afternoon because her levels were not high enough.

Well, it's 2am and I really need to get some sleep. It has taken me forever to write this post...blood draws, diaper changes, itchies to deal with, etc. She is sleeping peacefully now and just a few minutes ago she said "mom"!!!

Sophie & Elsa Reunited...

This post requires no words. Maybe just some tissues...

Busy, busy, busy...

In a good way.

I took the night shift last night. I was with Sophie in the ICU until about 5:30am. Brandon came up around 4:30am but I had to clip her nails and make sure she was all comfy before I could leave. She has been scratching the heck out of herself (side effect of morphine) and since the hospital doesn't have any fingernail clippers I had to wait until Brandon brought them up to me. She is now on oral tylenol with codeine so hopefully the itchies will go away.

But I was exhausted. Did not have the energy to update last night. Besides, there wasn't much else to say after Brandon's post. She was sleeping away in the ICU. Irritable at times but we kept her on a regular dose of morphine.

I slept in until 10am. As I was cleaning out the bathroom, Brandon walks in with Elsa!!! I was in complete shock. I seriously thought I was hallucinating. I just stood there and stared at them for a minute. Trying to register, in the foggy mess that I was in, that Elsa was here.

Once I snapped out of it, I held her tight in my arms. It felt so wonderful. I missed her so much. She wrapped her tiny arms around me and squeezed hard and put her head on my shoulder. I felt rejuvenated. Good thing because she was FULL of energy...wanting to explore everything around her.

Once we all got ready, we headed up to the hospital to see Sophie. Since Sophie was still in the ICU, Elsa wasn't able to see her just yet. I went back to see Sophie for a bit and then we all headed to lunch with Brandon staying back with Sophie. After lunch, I got to see Sophie for just a little bit. Then Brandon, Elsa and I headed back to the RMH so Brandon could eat lunch and Elsa needed a nap. I wanted to spend as much time with Elsa since she is heading back with Jason early tomorrow morning.

Elsa had other plans though. She wasn't ready for a nap. We played for a bit and she finally grew tired. We cuddled together in bed. It was sweet. She was snuggled in between Brandon and I. Once I knew she was sound asleep, I got some things done (laundry, etc.).

Once Elsa woke up, we all went to the hospital to see Sophie again...including Elsa. It was so sweet. Elsa kept giving Sophie kisses and waving hi. Sophie couldn't take her puffy little eyes off of her. I haven't left Sophie's bedside ever since. She is doing WONDERFULLY...all things considered. She continues to be so incredibly brave. I am so proud of her.

It's a little after midnight. I can officially say that none of us saw Sophie have any seizures on Saturday, May 30th. One day at a time.

The most important fact...

Jason forgot to mention the most important fact...

WE HAVE NOT SEEN SOPHIE HAVE A SEIZURE IN THE LAST 24 HOURS!!!

Update from the Uncle JayJay

Elaine has had a full day so I will attempt my first blog. Grandma surprised Elaine with a 24 hour visit from Elsa her 16 month old daughter. She has been in shock, joy, and excitement with both her daughters here.

Sophie is doing great! She transferred out of the ICU and to the floor this afternoon.

Movement: She is moving all four extremities! Her right arm and leg are weak but she is moving them better than the doctor's expected after surgery. Not a surprise knowing Sophie's disposition:)

Talking: Sophie said "wah wah" and "more" when Brandon and I were giving her mouth swabs. It was like hearing a child say their first words. Tears welled up in our eyes with excitement. Since the first few words she has said JayJay, Momma, and Dada.

Eating/Drinking: Sophie is drinking any juice we set her up with. She will be moving to soft food later tonight.

Hockey game: A glorious man donated 4 lower level seats to game 1 of the Stanley Cup playoffs here in Detroit. I need to wrap this up in time to shower and get to the game, and yes Brandon is going with me.

I know Brandon and Elaine have appreciated all the support from the IS group, teachers, friends, and family.

Jason

Reunited

After 13 hours that seemed like 13 days, Elaine is with her baby girl again. Sophie has moved both arms (which we were told to expect very little out of the right arm** at first so once again, she is bucking the odds). The recovery nurses also said she tried to talk a little. She looks great...swollen but great!

Brandon

**This is because they removed areas so close to the motor cortex that they felt there would be some temporary weakness on the right side for maybe a few weeks.

Surgery is over...

It's about 7:30pm. Dr. Sood came in about 30 minutes ago. Surgery is over. From a surgery standpoint, everything went smoothly. Sophie will be in recovery until about 8:30pm and then will be transferred to the ICU. She will have 2 drains in...an external ventricular drain and JP drain. The EVD will be removed on Sunday and the JP drain will be removed on Tuesday. She will most likely be moved to a regular room sometime tomorrow.

I can't wait to hold my baby girl in my arms. I am going through serious withdrawal. I am so use to having both Elsa and Sophie climbing all over me everyday. At least, I have been able to see and talk to Elsa. I LOVE Skype...free video calling. At first, I thought maybe it would upset her but it hasn't. Yesterday, we played peek-a-boo. I told her to go hide and she climbed off of NaNaw's lap and laid on the ground face down. And then she would look up at me and smile. So incredibly cute!!! I got to see her "read" a book, dance around when I turned on music and so many other things. She has been having a blast. NaNaw has been taking great care of her along with wonderful help from Aunt Colette. Tonight, my parents will be taking over until we come home next week. Tomorrow, NaNaw will be flying here to see her precious little Sophie and Jason will be flying home on Sunday. I am so incredibly grateful to be surrounded by such wonderful family and friends...THANK YOU!!!

GREAT NEWS!!!!!!!!!!!!!!!!!!!!!!

It's 5:45pm. Break open the champagne. We are celebrating. NO SPIKING IN THE MOTOR/SENSORY CORTEX!!!!! She is still in surgery...Dr. Sood is closing her up. Dr. Chugani and Dr. Asano just came out to talk with us. There is still some spiking on the right hemisphere but still no actual seizures noted. We will be very aggressive with the anti-seizure medication to ensure WE NEVER SEE ANOTHER SEIZURE AGAIN. We will update more when Sophie is transferred to the ICU. Thank you all for your thoughts and prayers!!!

Thoughtful package...

We found this creatively wrapped package on our doorstep last month...a very thoughtful gift from CB. Sophie had fun opening it and playing with what was inside. Thank you.

Easter Pictures...

Purina Farms with Uncle Ed, Aunt Erica, Uncle Ricky and Cousin Ben (only 3 weeks younger than Elsa)...

Brandon had a death grip on Sophie because the first animal they got to pet...a baby duck...she grabbed by the beak and held in the air. The lady freaked out and let go when Sophie grabbed it. Poor baby duck...probably traumatized for life. Sophie had no idea what she did. Of course, I was in charge of her at the moment. Brandon took over after that.

Elsa and Ben...they could be twins.

Update From Dr. Chugani

Dr. Chugani came out at 1:45EST and said things are still going very well. The back is almost done and then they will move to the front. Dr. Sood estimates that they will be able to read the motor cortex around 4 or 5... Wow that is a long time!!! My heart drops any time a doctor comes through the door. The phone call is so much safer because you know that the nurse is going to say something generic like "things are going fine".

On a lighter note. I have received further confirmation that people in general are socially retarded. I grabbed a sandwich at Subway about an hour ago and the lady asking me what kind of cheese I wanted says, and I quote "Why so serious? Cheer up, its Friday!". Does she realize that she works in a hospital? My initial reaction was to say "Yes, big plans for the weekend. I plan on starting rehab with my daughter that is getting half her brain removed." I resisted and smiled instead.

Brandon

Still waiting...

Surgery began around 10:15am. We have received several updates from the operating room nurse...

OR Nurse: Everything is going well.

Me: Thanks for the update.

OR Nurse: I'll call back in an hour.

That is it. So not much to update. Not until they come to point where they have to make a decision on the motor and sensory cortex. Dr. Chugani did stop by to say everything in the OR was quiet...just the way they like it. It will probably be late afternoon before they make a decision on the motor and sensory cortex. So I won't be updating regarding the surgery until we find out what the decision will be. But I may post some more videos...it's calming to me to go back and watch them.

Sweet Licks...Umm Kisses

Enjoy...

Thank you...

Thank you Kelli and Robert for the yummy edible arrangement and balloon.
The chocolate covered strawberries were delicious!

Thank you Aunts, Uncles and Cousins for the beautiful flowers, teddy bear and balloon.
They really brighten up the room.

Thank you Uncle Steve and Aunt Diane for the cards.
They were very thoughtful.

The waiting begins...

It's 8:50am. The anesthesiologist, nurses and Dr. Sood all came in and talked with us. They just took her back about 10 minutes. It will be about an hour before the actual surgery starts.

This morning has been by far the hardest moment. There is so much unknown. So much to be hopeful for but also so much to be scared about. It will be what it is but the "not knowing" part is always the hardest. Not yet knowing what to accept. It has always been that way ever since Sophie was first diagnosed at 6 months of age.

Thank you all for your words of encouragement. We are trying our hardest to stay positive. We are just so incredibly scared, emotional, tired, hopeful, grateful...so many mixed emotions.

All About Poker

Probably not the time for this (especially after my "think for the best" speech), but upon awaking after 3 hours of sleep last night, I couldn't get one thing out of my mind, my initial read**. Many that know me well understand that I would rather play poker than most anything, but life and the need to actually receive a paycheck keeps getting in the way. I study body language and reaction to get a read on what to do, fold, raise, call, talk, don't talk, etc. (for those that lost money to me, ignore this post as I am not paying attention, really).

So, what does this have to do with Sophie and the surgery? When Dr. Asano and Dr. Chugani came into the room to give us the surgery news, I had two different reads. Dr. Chugani was displaying subtle confidence (consistent with the not terrible but not great news) but my read on Dr. Asano was much much different. As Dr. Chugani took over the description, I never took my eyes off Dr. Asano. My initial read (the one that poker players say you should stick with 90% of the time) was that there was a level of guilt or concern there. He consistently looked down to the right. As I awoke this morning, I couldn't get this image out of my head. I recalled from the show Lie to Me (predictable but also very interesting analyzing body language) that my read was probably accurate, but what about the Japanese culture. Could it have just been a sign of respect (but then why not just down...why the right also)? Am I overanalyzing? Probably... Nonetheless, I couldn't fall back to asleep, because I didn't trust my read and folded. I chickened out! I did ask the question "knowing what you know now, would you have recommended starting the surgery"; however, only Dr. Chugani answered. What would have Dr. Asano have said?

So, I searched for looking down and to the right on Google and confirmed:

"Looking down

Looking at a person can be an act of power and domination. Looking down involves not looking at the other person, which hence may be a sign of submission ('I am not a threat, really; please do not hurt me. You are so glorious I would be dazzled if I looked at you.')

Looking down can thus be a signal of submission. It can also indicate that the person is feeling guilty.

A notable way that a lower person looks down at a higher person is by tilting their head back. Even taller people may do this.

Looking down and to the left can indicate that they are talking to themselves (look for slight movement of the lips). Looking down and to the right can indicate that they are attending to internal emotions.

In many cultures where eye contact is a rude or dominant signal, people will look down when talking with others in order to show respect."

Pretty consistent with the read but I missed the attending to internal emotions. Maybe he does just take these things personally. Maybe he was feeling guilty for approving the surgery (he is the most conservative, but I hope not). Maybe he was showing respect but he wasn't talking at the time and why right??? Maybe he thought I looked glorious and was dazzled by me...probably not. Part of me wishes I didn't notice.

Okay enough of that. I will ask him in a couple hours. Won't change our course but I need to know that all of my questions were answered and that I hear directly from Dr. Asano what he is feeling...maybe I will get a few more reads :)

Speaking of poker, while talking to Elaine last night, the only analogy I could come up with is that this feels like a race...a coin flip. We have pocket 10s and the infantile spasms has AK suited... The pocket 10s are a slight favorite so maybe it is the other way around. Either way, heads we win, tails we lose. Are we prepared to flip a coin on this? Are both sides tails? If the alternative is don't flip the coin and always lose, don't you have to flip?

I guess I am back to think the worst and hope for the best philosophy. It just works better for me. Many times when facing a race, I will say "I know I am going to lose this hand". Reverse psychology...although it doesn't change a thing. The flop, turn, and river are set. The cards are on the table for everyone to see.

Thanks for reading. It may have sounded negative but it really helped me gather my thoughts. I am not usually this much of an open book. Please use whatever method works best for you: prayer (even if laodicean), thoughts, reverse psychology, positive thinking, meditation, sacrifice a lamb (okay don't do that, a little outdated)...we will take it all!

Brandon

** All words in italics and bold is poker terminology.

What is under that wrap...

Sophie's wrap came completely off tonight. They kept trying to reinforce it but it just wasn't working. Luckily, a different surgical resident was on call from earlier today. She was amazing. She actually took a look at the bleeding that was occuring on the front of her head and analyzed it. She took the wrap off and put a new one on. It looks SOOOO much better. Earlier, Sophie kept itching her head and pulling at the wires coming out...AH YAH YAH!!! Not for those with a weak stomach (hmmm...my husband). I took a few pictures but as I realize all of you may have the same feeling as my honey, I set up a new blog with the pictures. Though, I didn't actually take pictures of when the wrap was completely off (with the stitches, shaved head and more wires). Jason thinks that I should actually shave Sophie's head completely. I thought maybe I could do some kind of combover and put a bow in it. But after seeing what it actually looks like...maybe not. Jason and Brandon both said they would shave their heads also. What do you think???

Pictures taken when I first saw her this morning.

The bleeding in the front of her head was actually about three times worse than in this picture.

The head wrap was also a lot higher on her head before they rewrapped it.

Her new head wrap.

Surgery Strategy

The news is in. Not great, not terrible.

The diagnosis:

-- Sophie's seizures are originating primarily from the left frontal cortex with a lot of spiking** in the left temporal, left parietal and left occipital cortexes.

-- There is also a lot of spiking in the left motor and sensory cortex (more on that later).

-- There is also some diffused seizure activity with no focal origination.

-- There is also some spiking over the entire right hemisphere though no seizures were noted originating from the right hemisphere (good news...though of course it would have been better not to see any spiking on the right hemisphere...more on that later).

**Spiking is considered seizure activity but not a seizure. Makes perfect sense...right?


The plan:

Step 1: Keep our composure, man this sucks!

Step 2: Repeat step 1.

Step 3: At 8am tomorrow, Sophie will be taken back into surgery for a subtotal hemispherectomy (I will pause for you to grab your medical dictionary, ready?). In other words, they will remove the left frontal cortex, left parietal cortex, left temporal cortex and left occipital cortex and LEAVE the motor and sensory cortexes.

Step 4: Immediately after the subtotal hemispherectomy, EITHER step 4a, 4b, or 4c will occur. They will keep the grids on the left motor and sensory cortex and right hemisphere for immediate observation.

• Step 4a (best case scenario): After the subtotal hemispherectomy, no or minimal spiking will be noted in the motor and sensory cortex and no further action is needed.
• Step 4b (so so scenario): The motor and sensory cortex will continue to show spiking in which they will perform a multiple subpial transection (MST). In other words, the cortex will stay but slices will be made to the horizontal nerve fibers.
• Step 4c (don't want to think about it scenario): If they continue to see a lot of spiking in the motor and sensory cortex, they will remove it. If they remove this cortex, Sophie will be weak on her right side and lose a lot of her fine motor skills in her right hand and walk with a limp. Considering the delays that she already has, this would be one more further setback to overcome.

Step 5: Repeatedly perform Steps 1 and 2...

Step 6: See Sophie in ICU at 6 or 7 pm tomorrow night...almost 12 hours later.

Step 7: Never see seizures again! Okay, maybe overly optimistic but why not change course. My philosophy ever since ACTH didn't work has been to accept the worst and hope for the best. This way you can't get crushed. But it is way too late for that now.

So, the only reason we are closer to answers is passage of time...which seems to be on slow motion. Sophie is still being strong as always. As I started typing this blog, she woke up and without prodding, she blew me two quick kisses with her lips. I think she is telling us that we are doing the right thing and she can handle it. Elaine can't wait until she can cuddle up and snuggle (Sophie's favorite pastime) this Saturday.

Brandon (with technical editing from Elaine)...because I have no idea what parietal means

Update right before posting: Sophie just sat up and started waving and saying "hi hi hi hi" to Elaine. She even said "hay hay" when we showed her the picture of her older sister. We sat her up and she drank a little.

One look at Sophie this morning and I was in tears. Just as the doctors predicted, she is starting to swell. They said today would be the worst. Her left eye is swollen almost completely shut. The gauze around her head just won't stay on. They have reinforced it so many times and it just keeps riding up. The last thing I need to see at the moment is what is underneath all that gauze. I can already see a few stitches peaking through and the actual wires coming out of the back of her head. ACK!!!

Then, as soon as Brandon walked out of the room and I was left alone with her, she woke up. Broke my heart! I tried to hold it all in for her. To be strong at the moment but it was hard. She didn't even try sitting up. Her left eye just barely visible. And she cried and moaned like she was in pain. All I wanted to do was swoop her up in my arms. She looks so weak and it breaks my heart that I can't hold her. After only a few minutes, she settled down and went back to sleep. I called the nurse and requested another dose of morphine (she hadn't had any since 2am).

Jason took the first part of the night shift and from what I have heard...she did great. Brandon took over around 5am. After he posted his updated, she vomited once. They gave her some more Zofran. She has had no desire to drink anything since she has left the ICU. Her mouth looks so dry but she doesn't want me to swab it with water. I've been putting a lot of vaseline on her lips to keep them from drying up too much.

She is sleeping peacefully at the moment. We just need to get through the next 22 hours. Once she is in the hands of Dr. Sood and Dr. Asano, I believe all will be well. They are amazing doctors. I am anxious to meet with them to find out what the consensus will be in what areas of the brain they would like to remove.

Quick Morning Update

Sophie had an uneventful night. Sleeping and some morphine has become her routine. No seizure clusters. Some swelling has arrived (her left eye doesn't open) but her face still looks great (good genes from her mama).

Brandon

Prepared But Still Learning

As I (Brandon) sit down to send a second epic blog, I came to the realization that without material, it is very difficult. Since we left the ICU, Sophie has slept...no seizures (kind of odd but they have given her high doses of Dilantin and Depakote), no vomiting, no beeping, no swelling (where is this swelling that we have been preparing for???) = no stories. Maybe it is the calm before the storm...

So with limited material, I offer the realization that no matter how prepared and educated on this subject you are, the most subtle question and answer can mean the exact opposite of what you thought. We come to Detroit thinking we have asked all the questions and understand the consequences of all the answers. What does it mean if the seizures are originating from the left or right? What if the motor cortex needs to be removed? Does she talk? Does she walk? Do her seizures favor one side of the body? And then the simple question, is she left handed or right handed?

I don't think we have met with Dr. Chugani a single time in the last 2 1/2 years where he didn't ask this question. In fact, the first time we met him he predicted that she would be left handed based on the results of the pet scan. Over the last 6 months, she has favored her left hand maybe 70% of the time, which is what we reported to Dr. Chugani for the second surgery conference. One of the reasons for the recommended surgery was her favoring the left hand. So, that is a good thing, right? As I spoke with Dr. Chugani this morning (he really talks to you, not down to you), he references that her being "weak" on the right side may be an indication the left motor cortex is damaged. I immediately started back-peddling..."wait, when we told you that she FAVORED her left, we didn't mean she was WEAK on the right" trying to rationalize in my head that the motor cortex will be fine...and maybe it will. We will know in less than 24 hours THE PLAN, which we know in our hearts is THE ANSWER. It is funny that we have been playing up her left-handedness as a positive and are moving it into the negative column 36 hours before the surgery.

Jason slept until noon today and will be taking most of the night shift so that Elaine and I can sleep. He also went to the grocery store and the 3 of us somehow devoured way too much food. Can't thank him enough. One of us will update you early in the morning.

Brandon

In a new room...

It's around 4pm. Around 2pm Sophie was transferred from the ICU to a regular monitoring room (#586). Dr. Asano and team immediately started the motor and sensory mapping. Everything went well. In motor mapping, they send an electrical current to the electrode on the brain which causes a part of the body to move. In sensory mapping, they tape a device to the area which sends electrical current and then monitor the EEG to see what area is being stimulated.

Sophie is still in and out of sleep. She vomited again right before she was transferred. They gave her another dose of Zofran. She is still doing extremely well. Around 3pm, she received 1mg of morphine. Pretty boring stuff...just the way we like it!!!

Just to spice things up a bit :) here's a video of the sensory mapping...

My Sweet Baby Girl...

Here are some pictures so you can all see how well she is doing...

Up and drinking...

It's about 11am. Sophie woke up about 15 minutes ago and sat up. She was alert and talking. Repeating the words we asked her to. Then she chugged a cup of apple juice. Brandon got here about 45 minutes ago, so he was able to see all of this. It was heartwarming to see her awake and not in pain. Just a little disoriented. She is already sleeping again.

Her face looks incredible. Very minimal swelling. Sophie will be transferred to the 5th floor for monitoring as soon as the room is available. Once she is transferred, Dr. Asano will perform the motor mapping.

Thanks for checking in on us. The first thing Brandon did once he checked in on Sophie this morning was read all the comments from his post. Thank you all for being so incredibly supportive! I will be posting pictures this afternoon once I get my laptop back (I left it at the RMH).

By the way, we are staying here:

Ronald McDonald House

Room #25

3911 Beaubien St.

Detroit, MI 48201

And we are at this hospital:

Children's Hospital of Michigan*

3901 Beaubien

Detroit, Michigan 48201

*Not sure what room we will be in yet.

Morning of Day 2...

It's 8:30am. I got here about an hour ago. I can't believe I slept that long!!! Brandon left shortly after he posted** and Jason took over. I woke up when Brandon walked through the door. Even though he didn't tell me everything (thank goodness he didn't...the seizures, the vomiting...it would have sent me running), I was having a small panic attack. My chest felt tight and I was anxious to see her. I didn't think I would ever fall back asleep. I thought maybe it was my mommy intuition kicking in to go check in on her. But I didn't give in to it. I knew I needed my rest to take over the next shift. Besides the fact that Jason is technically more qualified to take care of her than I am (being an ICU nurse for so long...he knows EXACTLY what is going on and what she needs and he is use to working the night shift). So in the end, I had nothing to worry about...Brandon and Jason took EXCELLENT care of Sophie.

Sophie is doing extremely well despite all that she has been through. She doesn't seem to be in any pain. Just a little uncomfortable. Her pain management order is 1.5mg of morphine no more than every two hours. So far, she has received the following dosages...

Sophie received a dose of morphine right before being transferred to the ICU. Then she received 1.5mg at 10:20pm. And 1mg at 2am and 7am. She is resting quite comfortably and she looks so peaceful. She did vomit once more on Jason's shift. They gave her some Zofran to settle her stomach. (Update...she received another 1mg at 10:25am).

Dr. Sood, Dr. Asano and a few other doctors where in to check in on her. They all thought she was doing great.

**Who knew...my honey is quite the blogger!!! It gave me a few laughs when I read it this morning. Oh, and the whole fainting thing...he isn't kidding. During one of Sophie's many ER visits, the nurses were more concerned about him than Sophie because his face was bright white. They had him sit down in a chair and brought him some water.

What is That Beeping?

It is 2:35 am. Greetings from the night shift. Sorry for the long post but I couldn't stop writing. Sophie is fine but keeping dad on his toes (literally and figuratively).

As Elaine and Jason walked out, I pulled out the laptop and settled in for a relaxing movie as Sophie slept away...however, the various monitors and Sophie's roommate had other ideas. I haven't sat down since they left.

First, Sophie decided to give Dr. Asano plenty to read when he gets here in the morning. She woke up and had about 20 seizures. She was not very happy when she opened her eyes to a strange nurse rather than her favorite person in the World (her mama). However, she had to settle for the dad as she continued to say mamamamamamamamamamamamamamama. It was only 5 minutes after Elaine had left but I knew she wouldn't get any sleep if I called her every time something happened. Sorry Elaine but you and baby need rest.

Second, they gave Sophie some morphine and she fell back asleep. I immediately told them to get her seizure meds (Depakote and Dylantyn) just like Elaine gave me instructions to do. I believe it was one of the 20 instructions...the yellow line means this and should be between this and this, the green line, the blue line, the red line, the purple numbers, the ICP range, don't forget to write down the seizure activity, only let the morphine go in this tube (that one came in handy as the nurse seemed confused), etc. etc. etc.

Third, the yellow line (which I recalled was breaths per minute and should be approximately 20) went down and down and down until it was zero and the machine was beeping repeatedly. She was breathing (don't worry even though I sure did) but the morphine made her breaths shallow. This yellow line continued to crash and go off every 5 minutes while I made sure she was breathing and became obsessive of counting the breaths per minute myself.

Okay, time to relax until the kid that Sophie is sharing a room with had everything beeping. He proceeded to have 3 different IVs put in and come out within the next 2 hours. Since his parents are nowhere to be found, I became the person silencing the beeps on his machine too for the nurse (and assuring him that he would get ice cream soon...that may be the only word he knows). Even though she repeatedly thanked me, I assured her it was in my best interest to shut it up (the machine, not the kid) as well.

Back to Sophie. Fourth, around 11:30, I asked Dianne (her nurse) whether her seizure meds were here yet. She said they would only come if she had 2-3 seizures. Did I imagine those 20 seizures, which she was standing right next to me during? Evidently it wasn't as obvious to her even though I told her and asked her to get her meds...end of the shift I guess.

Around 11:45, Laura took over. Laura seems to be getting everything much more organized around the bed but that woke Sophie up. Sophie had one of the longer clusters I have seen (40 or more). More data for Dr. Asano!!! But once again mamamama was the word of choice (although she did throw in a "door", which is her favorite word when wanting to leave a room...I don't blame her) during the episode as I continued to ask WHERE WAS HER MEDS? At the end of the cluster, Sophie decided to really test my stomach by throwing up a little towards me (green which I was assured is normal).

Elaine can confirm that I don't have the strongest stomach for blood, needles, and puke so this is the fainting trifecta. But I made it through and so did Sophie. She is so brave and strong.

Back to hopelessly trying to 'interpret' the 120 different leads on Sophie's brain. Which one spiked first? No idea...will wait for Dr. Asano to fill us in tomorrow.

Time to rest...

It's 10:45pm**. Time for all of us to get some rest...well not Brandon quite yet. Sophie is doing INCREDIBLE. It was hard seeing her and not being able to scoop her up in my arms. But she looks amazing. Her head is all wrapped up in guaze but there is no swelling. She is just sleeping peacefully. All her vitals look great. They haven't given her any morphine since she left post-op recovery. I am worried about pain over the next few days but Sophie has always had a VERY HIGH pain threshold so hopefully she will do well. They keep telling us to expect swelling in the next 24 to 48 hours. So far...none. She was a little pale coming out of surgery but her color is back. I am just glad that she is resting so peacefully. She did try to sit up twice but went right back to sleep. I have to admit...it was heartwarming to see those precious eyes of her if only for a second.

Dr. Asano came in around 9pm to do some testing. He turned off all the lights in the room and put this bright flashing strobe light in front of her eyes. He was mapping out the part of the brain that controls visions...just amazing!!! Once he analyzed that data, he did another test. He put a small device on her right hand that sent electrical pulses. He said it feels like static electricity. Her hand just kept twitching. This was to map out her sensory area. She was completely out of it for both of these test.

Jason and I are back at the RMH. Brandon is taking the first shift until about 2am or 3am. Jason is taking over after that. Then it is my turn. They insisted. It was hard for me to leave but I have another little one brewing in the pot to worry about it. I cannot believe how much at peace I am with all of this. Thank you all for your thoughts and prayers!!!

**I keep posting the time because blogger is not letting me publish on EST. I changed my computer to EST but then it was delaying my post for an hour. Couldn't figure out what was wrong and between all the different computers that I am using, I thought it would be easier if I just put my own time stamp on everything.

Sophie Looks Great

Elaine is with her baby girl right now. She is sleeping, breathing on her own, and looks really good. She hasn't started swelling yet. They said that she sat up in bed in recovery, which is definitely our Sophie trying to get right back at it.

Brandon

Grid Surgery - Sooner than we thought...

It's a little after 4pm. We got a phone call about 30 minutes ago giving us an update saying that things were going great.

And about 10 minutes ago, Dr. Sood came in to say they were DONE!!! ALREADY!!! Everything went well. She will be in recovery for about an hour before she goes to ICU. We won't be able to see her until she is in ICU.

Even though they have seen a lot of spiking on the left hemisphere, it is too early to say exactly where the seizures are originating. He did not have any information regarding seizure activity on the right hemisphere.

I cannot believe how calm I have been today. Thank you all for your thoughts and prayers. Your comments, e-mails, phone calls and these special blog posts (Our Jackers, Dear Trevor, Austin's IS Journey...be sure to also click on the second this) have warmed my heart in a time that I thought I would not be able to handle.

Everyone at the hospital have been amazing and the constant updates keep me busy posting away. I have had a lot to keep me distracted today.

But soon I will be able to see my baby girl again. I am scared. Scared to see what she is going to look like. All wrapped up in gauze. She will be well sedated for the night so hopefully she will get plenty of rest. They have prepared us for swelling. Since she had grids placed on both sides, they said that swelling will probably be worse than normal. But the swelling will be worse tomorrow. I just can't wait to give a kiss on her sweet cheek.

When she was taken back to the operating room, I got to go with her. They initially sedated her with gas and she was out within 10 seconds. I got to stand by her side and tell her that everything was going to be okay. Then I was able to give her a kiss and say goodbye. It was hard to walk out of that room. But I knew she was in great hands. There is nowhere else I could imagine her having the surgery. They have done so many of these surgeries that they have learned all the little things that make things go smoother.

Grid Surgery - Meet the doctors...

It's 2:55pm. We just met with Dr. Chugani and Dr. Asano. Talk about a dream team. Dr. Chugani, Dr. Asano and Dr. Sood are just amazing and caring doctors.

Here's the update from Brandon (I am going to try to eat something)...

The surgery is going well. They have completed placing the grids on the left side and Dr. Sood is currently closing. She has had no major complications. The next step is the burrow on the right side with 2 grids to be placed. Dr. Asano spent 15 minutes discussing what to expect next. Sophie should be in ICU by 7:00 and he expects that she will have 2-3 seizures within the first hour (the EEG is already showing activity...not unexpected). By tomorrow, they will start her on Dylantin and Depakote through her IV and start mapping the brain. We will keep everyone posted.

Grid Surgery update...

It's 2:05pm. We just got a call from the nurse in the operating room. Surgery is going well and the grids are being placed.

Our trip, so far, in pictures...

This is Sophie. Happy as can be. In a long car ride.

As long as she has her mommy and daddy...she is so content.

Sleeping beauty.

Waiting room.
Pre-op...in the most comfy hospital gown I have ever seen.

Hootie...deserves a post on its own to explain his significance.
Included in the bag is a note from NaNaw (Grandma Debbie).
This bag went with Sophie during surgery to watch over her.

Grid Surgery has started...

It's almost 1pm. We just received an update. Surgery just started. Everything is going well.

By the way, Sophie's legal name is Charlotte Sophia Coleman. She was nicknamed Sophie before she was even born by her older sister, Haley. It just kind of stuck. Confusing when it comes to this medical world. I received a phone call from Emma (Alex's mom) checking in on us this morning and the hospital staff was quite confused. Also, our cell phones do not work in this part of the hospital so the best way to get ahold of us is through the internet.

Grid Surgery Pre-op...

It's 12pm (Detroit time) and Sophie just went back for surgery. It will take about an hour to prep her for surgery. The surgery will take about 4 to 6 hours.

We met with Dr. Sood (neurosurgeon) this morning. He answered all of our questions without even having us to ask one. In other words, he explained things very well.

We should have an update in about an hour.

The rest of our trip...

Sophie was a WILD CHILD as soon as we got out of the car. Bouncing off the wall crazy while we were checking in. As soon as we got settled in, we left for dinner. Amazingly enough, Sophie did not mind getting right back into her carseat. We drove about 15 miles (there is nothing to eat right around the RMH except during business hours) and found a Panera Bread. Again, as soon as Sophie was out of the car, she became as silly as ever. She was slap happy silly and it was funny to watch her. We were all seriously cracking up. Then we stopped by the grocery store and the fun continued. And continued when we got back to the RMH. She did not end up going to bed until a little after 11pm. I wish I took video because I cannot explain the things she was doing and words would not do it justice. She was just up and down and all around the place just doing the goofiest things.

Sophie is still sleeping. The hospital is literally right next door. We are leaving here in about 15 minutes to check in at the hospital.

My heart is racing. Fighting back the tears. They seem to want to flow easily nowadays. THANK YOU so much for all the thoughts and prayers. It means so much to us. It warms my heart and brings peace to my soul. I love you all!!!

On our way...

We left at 6:45am for Detroit. It is about an 8 hour drive. Not too bad with 3 adults...Brandon, Jason (Brandon's brother) and me. Sophie is INCREDIBLE in the car. She is easily entertainable. Sophie was still sleeping when we were getting ready to leave. She was up late last night so she would have probably slept in until at least 8:30am. So Brandon tried to put her in her carseat without waking her up. No such luck. But she was happy enough and did not mind getting in the carseat. So we all piled in but before we even made it out of the neighborhood we had to pull over. Sophie was having seizures that were making her quite upset and she wanted out of her carseat. Broke my heart...always does. So I held her and comforted her until they subsided. Her morning seizures are the worst...almost always makes her upset. This whole scenario actually gave me a sense of peace with the surgery. I know we are doing the right thing. With each seizure I see since the decision was made, the more at peace I am with the decision.

We drove 4.5 hours before stopping to eat lunch. Sophie did great. She was a little antsy towards the end but no crying and no screaming. Currently, we have about 30 minutes left and she is still doing great. **I am updating through Jason's wireless laptop.**

Tomorrow morning is Part 1 of the 2 part surgery. We are to be at the hospital by 9am and surgery is scheduled at 10:30am. Before the surgery begins, we will meet with Dr. Sood (neurosurgeon). Usually, you would meet him the day before but since today is a holiday, we will meet him right before surgery. Normally, I would be going out of my mind not meeting with the neurosurgeon sooner than that but I really don't have many questions. Meghan (Our Jackers) has really put my mind at ease. Her son went through this exact same process last September. She has been incredibly supportive and has explained everything to me in such great detail. Her blog is also a wealth of information.

Well, it is around 6pm and we are pulling up to the Ronald McDonald House. I will update more later.

"THE" call...

I got "THE" call from Ruth today. There is an opening on Tuesday, May 26th and she wanted to know if we wanted it. Of course, she left the message on my cell phone and I didn't get the message until 7pm tonight. Brandon was out playing golf. I was home alone with the girls. I couldn't breathe. I felt nauseous. I want this. I want this so bad. But I wrote it off...that is us getting a cancellation. I am 34 weeks pregnant. I am not suppose to travel after 36 weeks. So if we didn't get the call now then we had to wait until after the baby was born.

I was in planning mode. Not trying to think about the actual surgery. Just trying to get all the details worked out...who was going to watch Elsa and the new baby, making housing accommodations in Detroit, trying to get a neuropsych evaluation appointment (which took me almost 3 weeks to get and I got the call this morning with the appointment date of June 1st), etc.

So here I am now. In just a mere 5 days, Sophie will be scheduled to have Part 1 of the surgery. All my prior planning is out the door. Useless. Now I need to focus on both planning and surgery. I am in shock. I can't believe it. I am scared!!! Scared is an understatement!!!

But I am happy?!?! Can't think of quite the right word to explain how I feel. I knew Sophie was going to have surgery. So better now than later. Of course, I wish she didn't. I wish her seizures would have just stopped on their own. But I am hopeful that surgery is the answer. But it is hard to be hopeful when so many things have failed in the past. But I can't think about that. I can't think about the "what ifs". I HAVE to put all my hope into this. That by the end of next week I will be able to say...I HAVE NOT SEEN ANY SEIZURES TODAY!!!

Baby feet...

After reading this post, it reminded me of this picture of Sophie when she was 10 months old.


I love baby feet. Love them. Love them. Love them. A bit obsessed. They are just too darn cute. So here are a few extra pics...

In the hospital (less than 24 hours old)...

Check out these chunky ACTH legs (10 months old)...

Taking a nap (23 months old)...

Practicing to be a contortionist...

These pictures were actually taken on April 1st...hence the warmer clothes. We have had really warm weather lately.

California Residents...

For all those who live in California (below is reposted from GwendolynStrong.com)...

Friends of Gwendolyn, Vote NO on CA Prop 1D

To Our Dear California Resident Friends:

California Proposition 1D will be on a special statewide election ballot on May 19, 2009. We are asking you to please VOTE NO ON PROPOSITION 1D and tell your family, friends, colleagues, and neighbors to do the same.

If passed, the proposition will have a material NEGATIVE impact on Gwendolyn's services and would eliminate "First Five", an important early childhood development program dedicated to improving the lives of California’s young children and their families through a comprehensive system of education, health services, childcare, and other crucial programs. "First Five" was created as a result of the passage of Proposition 10 by California voters in 1998.

Please VOTE NO ON PROPOSITION 1D. This is important to the well-being of our family and families just like ours.

City Museum...

My blog has been...well...a little all too medical lately. We do have some fun in between all the not so fun things going on. Back in March, we took all the girls to the City Museum. It had been quite a few years since we had been there and I was quite surprised with all the new things that had built. Everyone had an absolute blast.

We started off in the Skate Park.
It had a bunch of ramps and such that you could slide down and swing across.
The girls had fun climbing and sliding around.

Taking a snack break. All that climbing wore them out.

Haley went to explore with a friend and the rest of us went to Toddler Town.

We found Haley and headed outside to Monstro City.
Not a place to go if you have a fear of heights.
There are all these wire things suspended from the outside of the building that you can climb around. Sophie and I decided to watch as the rest of them explored.