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.
Friday, May 29, 2009
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
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.
Thank you...
Thank you Kelli and Robert for the yummy edible arrangement and balloon.
The chocolate covered strawberries were delicious!
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.
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.
Thursday, May 28, 2009
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 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.
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 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
Brandon
Wednesday, May 27, 2009
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
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...
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.
Tuesday, May 26, 2009
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.
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
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.
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!!!
Monday, May 25, 2009
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.
Thursday, May 21, 2009
"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!!!
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...
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)...
Saturday, May 16, 2009
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.
Friday, May 15, 2009
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.
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.
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.
Wednesday, May 06, 2009
Med Update...
Banzel has been a nightmare. We thought Sophie was regressing. We saw quite a bit of decrease in her verbal speech and ability to focus. Broke my heart. Scared me to pieces. But as we weaned Banzel, we saw things start to pick up again. What a relief!!! As of this morning we are completely off Banzel.
On the other hand, Sophie's seizures have been a little scary lately. She mostly has tonic seizures (quick seizures in which her head will drop and her arms will fly out...each seizure only last a second but they come in clusters). But lately she has been having more atonic seizures (head will slightly decrease and arms will fly out but she freezes in this position for 5 to 10 seconds while her body slightly shakes). Usually, she will only have one of these at a time. But on 2 separate occassions, she had 4 atonic seizures in a row. Completely wiped her out. She will immediately cuddle up in my arms and fall asleep for 15 to 30 minutes. Breaks my heart.
So is this because of the weaning of the Banzel or increasing of the Felbatol? She always has withdrawal seizures. Even if the med did absolutely nothing for her seizures!!! ABSOLUTELY SUCKS!!! How can a med that does absolutely nothing for seizures cause them to get worse during the wean??? Luckily, her seizures eventually stabilize.
So for Felbatol...we are currently at 2.5ml/day (1ml in AM, .5ml at 2pm, 1ml in PM).
On the other hand, Sophie's seizures have been a little scary lately. She mostly has tonic seizures (quick seizures in which her head will drop and her arms will fly out...each seizure only last a second but they come in clusters). But lately she has been having more atonic seizures (head will slightly decrease and arms will fly out but she freezes in this position for 5 to 10 seconds while her body slightly shakes). Usually, she will only have one of these at a time. But on 2 separate occassions, she had 4 atonic seizures in a row. Completely wiped her out. She will immediately cuddle up in my arms and fall asleep for 15 to 30 minutes. Breaks my heart.
So is this because of the weaning of the Banzel or increasing of the Felbatol? She always has withdrawal seizures. Even if the med did absolutely nothing for her seizures!!! ABSOLUTELY SUCKS!!! How can a med that does absolutely nothing for seizures cause them to get worse during the wean??? Luckily, her seizures eventually stabilize.
So for Felbatol...we are currently at 2.5ml/day (1ml in AM, .5ml at 2pm, 1ml in PM).
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