Discharge Day

Saturday morning we woke up at eight o'clock. It was the first night of our stay that we slept the whole night through without interruption. I was hoping that the anesthesia had worn off but it hadn't quite yet. Izabelle was quite grouchy and was sick of being stuck in bed. The doctors came to see us one last time. I asked them all my questions. Why does Izabelle have seizures?… they were still unsure. They told me that Izabelle has both frontal lobe and temporal lobe seizures. Does Izabelle also have Absence seizures when she does nothing but stare during a seizure?… the doctor said that Izabelle has complex partial seizures and even if her body doesn't show physical signs except for staring or taking a pause that both types of seizures they saw are considered complex partial. Izabelle had about six clinical seizures a day when we were in the hospital. About half where her 'classic' seizures where there were physical signs such as bringing her hands to her face and making noises. The other half were harder to detect physically but were coming up on the EEG. He did say that the two different types of seizures had a different seizure pattern on the EEG. Then I asked, what do we do now? He said that we would have to wait 5-6 weeks for results from the neurology team but at this point it wasn't clear if Izabelle was a surgical candidate or not. He said there were options of more pharmaceuticals and diet therapy which I already knew. I told the team that Izabelle was having one or two seizures daily before we were admitted on her current medications. They suggested I call the office on Monday for medication changes as well as to make a follow up appointment. I then asked, Are all these seizures affecting how Izabelle can learn?… I got the same response that I've heard time and time again… it is common for children with seizure disorders to have difficulty learning. I was left disheartened… had I just put my child through all this for nothing?… I was hoping for more answers. After the doctors left we had breakfast and spent a lot of time waiting for the EEG techs to come remove all the leads from Izabelle's head. My poor child got so antsy and fed up that she started to tear off her medical bracelets herself. I called the nurse station and told them that we had been waiting too long. They contacted our nurse again. When she arrived she took Izabelle's IV out. I'm glad she did because I'm sure Izabelle was headed there next. Izabelle cried as I started to take the gauze off her head to prepare for her leads to be taken off.  After the EEG tech arrived and removed the leads I soaked Izabelle's hair in conditioner and shampoo to help dislodge the glue and wrapped her hair in a towel as she watched sponge bob(I am so so sick of sponge bob!!!). Then we got in the shower together and I combed as much glue out of Izabelle's hair without making her miserable. Once dressed Izabelle realized she was 'FREE' and excitedly pranced around the room. We ended up waiting another two hours to be discharged. We were both fed up… I was ready to leave without signing the darn discharge papers but they finally came.  We made it out of the city without any wrong turns. I drove exhaustively as Izabelle slept soundly in the back seat but we got home safely. Thanks to wonderful friends we had a warm meal, groceries, a shoveled path and happy cats to come home to.

I hate ANESTHESIA!

The anesthesiologist decided to give Izabelle yet another new anesthetic on Friday for her third Ictal Spect because of her heart murmur. I guess in hope that it wouldn't create any irregular heart beats like the other two medications did. It wasn't until I was in the recovery room that one of the nurses said that if people were aroused earlier then one hour and a half after the anesthesia was given that they would go into a rage. This was my first red flag with the new medication. On Tuesday, I believe Izabelle was given Dexmedetomidine which made it very hard for Izabelle to wake up and created some irregular heart beats. On Wednesday, the anesthesiologists gave Izabelle something different…. maybe Propofol. This med didn't put Izabelle to sleep in a graceful manner but when she woke up it was easier. On Friday, when Izabelle came out from anesthesia she was not herself. While in recovery she couldn't stay still, was very restless and continued to roll around from side to side in attempt to get comfortable. I don't think she knew if she wanted to be sitting up or laying down. She kept getting tangled in all the cords so I decided to climb up into the bed with her to keep her still. There are no better words for it, but she was acting kind of drunk. The nurses brought us back to our room and I ordered dinner. Izabelle was grouchy, unstable physically and couldn't stay still. She kept repeating phrases and rocking back and forth. She had a meltdown when dinner came and she received fries with her hotdog (which she asked for) instead of chips. Later,  I gave her the MobyGo to play, a handheld game. She got so frustrated that she threw it across the room and had a fit when I took it away. Izabelle fell asleep at 4:30pm that afternoon abruptly. I couldn't let her sleep or we would continue our crazy irregular sleep schedule so I woke her up at 6:30pm. We stayed up until 9:00pm. Izabelle was still uneasy and I had to stay close to her bedside to make sure she didn't get wrapped up in her EEG chords. We both slept the whole night from 9:00pm-8:00am Saturday. 

My snow princess

It is hard to put into words what our experience here has been. Honestly I have gotten used to our crazy sleep deprived routine: keep the kid up late, sleep until four am, up for two hours and pray that a seizure doesn't appear until after eight am when the Isotope arrives and is set up in The IV. Yesterday, Izabelle had a seizure on time...it was the timing of the injection that was off. The amazing thing is that in six days by changing Izzys sleep routine her morning seizure has shifted from four or five am to seven or eight am. This morning she had a classic seizure at 7:20 :( . I was so worried that we wouldn't catch one today. We had a wonderful nurse Laura with us all morning. Izzy had a staring seizure. No other physical signs but a stare. The team was going based on physical signs that I would detect then inject. The doctors came and said that the next time her pattern on the EEG detected a seizure that we would inject regardless of physical signs. I'm not sure if these are absence seizures or not...but there are a few different types of seizures happening. So, as izzy was applying multiple temporary tattoos... The tech made a loud all call and a nurse just happened to be near our room. She stalled for a second and I told her to inject! It was a scene for sure...meanwhile izzy has no idea of what is happening. After waiting for the doctors to make a decision of the timing of the injection..the EEG tech came cheerfully into the room and said 'We did it!'. I gave her a big hug! We truly are in good hands. Thank God! Izzy is in recovery now sleeping soundly. Tomorrow we will venture home. 

Lots of visitors

Today Izabelle was paid a visit by Santa, a guitarist and Chris Humphries from the Celtics. Another go for the ICTAL spect tomorrow morning. 

Santa visits!!!

This half Jewish kid sure has a lot of Christmas spirit!!! She even made Santa a present!

Dr. Bergin finally visits

Last night around eight o clock Dr. Bergin our neurologist at Boston Children's paid us a visit. Izabelle was wired, stir crazy and of course interrupted the conversation endlessly to fight for attention. From what I understand the team of doctors and nurses will be making a final presentation of Izabelles case in the next four to five weeks. At this point it is not convincing that Izabelle is a surgical candidate...unofficially that is. Right now izabelle is suffering from seizures originating in the frontal and temporal lobes. The seizure tends to radiate out to both hemispheres. During Izabelle's big event yesterday the left side of the frontal lobe lit up on the EEG. It looks like we might make some med changes upon our departure. Dr Bergin said that it is evident that Izabelle's current meds are somewhat effective. I assume she may up the doses on those and add something new. I'm still trying to figure out more details and will report out as I know more. As of now our third late night adventure looks to be a success. I was able to ensure that Izabelle was sleeping at the time of her Iv
set up. She had a seizure around eight am and I believe the Isotope was administered in a timely manner. Human error plays a big part...the nursing staff must act fast. Izabelle is still sleeping soundly in her bed as I type to the rhythmic beep of her IV machine... I've been awake since four am and look forward to sleeping in my own bed soon.

MOMENTS AFTER WRITING THIS THE DOCTORS CAME TO TELL ME THAT THE INJECTION WAS TOO LATE AGAIN.... NO TEST TODAY BUT ILL HAVE TO GO THROUGH THE SAME ROUTINE TOMORROW. SHOULD BE SLEEPING IN OUR OWN BEDS BY SATURDAY NIGHT NOW.

No fun, and that's putting it lightly...

Today I questioned myself as to why we are putting my child through torturous tests that mess with her bodies equilibrium. Not only is my child off all her seizure meds but she's being poked and prodded multiple times daily by strangers none the less, not allowed to eat for extended periods of time, she has no space to play and if she did she wouldn't go far because of multiple leads for EKG EEG and IV, her sleep pattern is being messed with... And I could go on and on. Today Sucked royally. Izzy was awake until almost 2am, woke up at 7:15am to her longest recorded seizure which lasted seven minutes. She wouldn't talk to me for what seemed like forever. Her postictal period was so long. She slumped down and slept again until 10:15am where she awoke this time to stomach pain and threw up. The doctors decided that we would try for another ICTAL spect as yesterday's was off by 10 seconds. No food today again until after the procedure. Torture. Torture I tell u... Today's scan ended up being INTRA ICTAL meaning they did not catch a seizure in the time provided to redo yesterday's test... So... We get to do this all over again tomorrow. Yay...NOT!!!! Double GRR.... Izzy is in good spirits anyway. She is amazing!!! This is what she looked like when we arrived in the scan room:

A long night and stressful morning but we made it!!!

Last night was a long night. Today was the ICTAL spect and the goal was to have Izabelle seize between 8:30am and 2:00pm. We stayed up until 11:30pm, then at 4:00am we were woke up by a nurse. The doctor instructed that I keep Izabelle awake for two hours then put her back to sleep. We were hoping that Izabelle would wake with a seizure. We made and hung tons of snowflakes, watched the Disney channel and went back to bed. Of course Izabelle woke at 7:15 bright eyed. I tried to get her back to sleep knowing the ISOTOPE wouldn't be delivered until 8:00 am or later. Izabelle seized at 7:50am... the nurse team rushed in to find us in the bathroom. An interesting pattern occurred... The tech would often notice seizure activity seconds before the onset of physical markers that I notice. We waited for another seizure but when the tech saw activity on the EEG I wouldn't. We were waiting for a larger seizure with physical markers. As a last resort I layed with Izabelle and tried to get her to take a nap. When I was ready to give up...there it was. I yelled out to the techs pushed buttons and the nurses ran in to administer the isotope via iv. Izabelle had no idea what was going on and was happy that she no longer had to take a nap. While we were waiting to have the spect we were entertained by a couple of clowns.

PET Scan

Amazingly Izabelle was able to successfully complete her PET scan today WITHOUT sedation!!! Met with the neurology team last night. They are looking for 10-15 seizures while we are here. She had two last night in her sleep. As of today Izabelle will be off all of her meds until we leave. We are looking for fireworks tomorrow and/or Wednesday between 8:00am and 1:00pm. Wish us luck.

YAY! One test down, two more to go!!!
A candycane for you!

Admission and Setting up the Leads

After waiting an extra few hours to get a permanent room we have found a space to call our own for the next five days. Izabelle's Angel bear (aka: Jessie Bear) is equipped with her very own leads, bandages and a hospital smock. The resident doctor informed me today that we will not be giving Izabelle Zonisamide tonight, only Tryleptal. This should induce some seizures tomorrow morning. The room is equipped with audio and video in the ceiling. Much better then at Barbara Bush hospital. Hope to collect a lot of data here. Onward!!!

Pit Stop at the Yawkey Family Inn

 We arrived at Boston Children's Yawkey Family Inn last night around 6pm. It is always an adventure. This time I had to drive in snow for about 45 minutes. I usually make numerous wrong turns but we made it without the GPS rerouting us a few times. We parked at the Boston Children's parking garage and walked (in the snow) about three blocks to the Inn. It was quite beautiful. I'd 
much rather be walking in the snow 
then driving in it! 

        The Yawkey Famlily Inn is a wonder place for families who have children who are being treated in the hospital. It's only $30 a night compared to $100 at the local hotels. We met people from all over the world: Rhode Island, Texas and Albania. Izabelle was excited to see that they had a beautifully decorated Christmas tree as well as a Menorah. She is secretly hoping for a present while we are here. You never know. 
      There is a ton of art hanging all over the house. All with a square format. What a wonderful way for artists young and old to give back to their community. I attempt to keep Izabelle up late but she falls asleep around nine pm and wakes up at six am. My attempt at trying to change her sleep schedule so she is ready for her tests. It felt good to be here a day early.

      

Snow Changes our Travel Plans

           It's winter and per usual, snow gets in the way of travel so I decided to leave one day early. Spent the whole day with a feeling of anxiousness. I couldn't stop for even a minute until now. I called Boston Children's Family housing and luckily secured us a room at the Yawkley Family Inn a few blocks away from the hospital. Checked in with admitting to make sure that we were still on for our slot for Sunday. You never know. This summer we had appt. to be admitted to Barbara Bush and we got bumped to a later date after rearranging my work schedule to accommodate our admission. I of course do not want to travel to Boston for nothing so I'm glad I called.   A few days ago a nurse from the radiology department called to interview me. Basic questions about Izabelle's current heath etc… and then explained that my little girl will be going through three different tests that require anesthesia via IV. I will never forget the experience we had in Boston for Izabelle's second MRI waiting in recovery for her to wake up. You say goodbye to your child for an hour or more, then struggle to get them to come back to consciousness all the time with fear in the back of your mind that something might go wrong. You watch as she sleeps motionless under dim light.

I like to think that Izabelle's spirit visits God for a bit and then comes straight back to me just like she did on the day of her birth. Once we got Izabelle to wake up, she had a hard time walking. I had to wheel her to the car in a wheel-chair and couldn't help but wonder what people were thinking of us as we made it across busy city streets to the parking garage. Now, I get to go through this three separate times… minus the wheel-chair and car ride back to Maine. No fun for us Monday, Tuesday and Wednesday. Keep us in your prayers in the morning to early afternoon those days.  Time to pack!

Going back in time…starting with the most recent test.

A picture from Boston Children's in October. Waiting for sedation for a MRI. The results didn't indicate any area damage of the brain. Just a small cardiovascular space that they believe is a normal variant. Izabelle is on Zonisamide and Trileptal. Her seizures remain controlled for three weeks.

In the beginning of September 2013 we had a 4 hour EEG in office to see how effective the addition of the medication Zonisamide was. No seizures were detected.

This is Izabelle keeping busy during our stay at Barbara Bush hospital in August of 2013. We were able to catch a few seizures on video and were sent home a day early. The results of the EEG were the same as in June of 2013. Lots of abnormal seizure activity. This is when Zonisamide was added and we were referred to Boston Children's Hospital.

We were serenaded.

Upon our departure. The EEG tech. was awful and left Izabelle's hair full of glue and other solvents. We needed a hat and this is what the nurses gave us during the summer...

June 1st, 2013
Getting set up for an 72 hour Ambulatory EEG in Portland. We find out that Izabelle was having about 40 seizures in a 24 hour period. I only witnessed four during the entire test. Dr. Morrison in Portland is very concerned and at this point I can't believe my baby has gone through basically an entire year of school like this. Dr. Morrison starts Izabelle on a few different meds. She doesn't respond to them the way that other children do. When Depekote is added, Izabelle begins to have more frequent seizures. I call and call the doctor's office like a mad woman. It takes three weeks of suffering to finally get the doctor to wean her off and put her back on her old med. We are back to square one.

An Overview

Over the past two years I have been on a journey as a mother seeking medical help for my daughter Izabelle who was diagnosed with Epilepsy in 2011. We are at the point where we have been referred to Boston Children's Hospital Neurology. Izabelle's medications are not controlling seizures at this time and we have tried many.

The week of December 16th, Izabelle and I will be staying at Boston Children's for five consecutive days for a multitude of tests including an EEG with video monitoring, a PET scan and two Ictal Spects. We are at a fork in the road at this moment. If the results indicate that there is a particular area of the brain in which the seizures occur, it may be determined that Izabelle is a surgical candidate. If not, we will be looking into the ketogenic diet, the vagus nerve stimulator and other medication options.

I have created this blog so friends and family can keep up with our journey. We will depart for Boston on Sunday, December 15th.