Saturday, June 10, 2006
Friday, June 09, 2006
“St. Paul or Bust” or “Long Day Coming”
Thank God it’s Friday, time to kick back and relax or spend the weekend in a hospital. We left Des Moines around 2:30pm much later than anticipated; it took a long time to get all of the discharge paperwork put together. I went home to pack and let Hoover out. My Brother was going to take care of Hoover while we were gone. He is not Hoover’s biggest fan but I think Hoover grew on him over the next few days.
We headed up to St. Paul with a pit stop in Clear Lake so the whole family could eat. We arrived at Children’s United Hospital and were checked into the Pediatric Eplipsey Unit; we then answered another barrage of medical questions. Grace was hooked up to the Video EEG that she would remain on for the next three days.
We had no place to stay and were told that only one parent could stay in the room with Grace. We were not only shocked and appalled but we had no idea what to do next. We were both so tired and beaten down with all of the information we had digested in the past 48 hours that finding a hotel wasn’t even something we were able to think about. Our brains could not function outside of anything but caring for Grace, when tasked with something outside of this realm we just shutdown.
We spoke with Dr. Ritter around 10pm. Ritter had reviewed the MRI and believed that Grace did not have the rare and life threatening form of Epilepsy! He wanted to run the Video EEG for the weekend and have Grace see an Ophthalmologist to officially rule out this rare and life threatening form of Epilepsy. Ritter asked where we would be staying and told us about some apartments that the hospital rented out for families that were connected to the Hospital; we were able to get a room.
We headed up to St. Paul with a pit stop in Clear Lake so the whole family could eat. We arrived at Children’s United Hospital and were checked into the Pediatric Eplipsey Unit; we then answered another barrage of medical questions. Grace was hooked up to the Video EEG that she would remain on for the next three days.
We had no place to stay and were told that only one parent could stay in the room with Grace. We were not only shocked and appalled but we had no idea what to do next. We were both so tired and beaten down with all of the information we had digested in the past 48 hours that finding a hotel wasn’t even something we were able to think about. Our brains could not function outside of anything but caring for Grace, when tasked with something outside of this realm we just shutdown.
We spoke with Dr. Ritter around 10pm. Ritter had reviewed the MRI and believed that Grace did not have the rare and life threatening form of Epilepsy! He wanted to run the Video EEG for the weekend and have Grace see an Ophthalmologist to officially rule out this rare and life threatening form of Epilepsy. Ritter asked where we would be staying and told us about some apartments that the hospital rented out for families that were connected to the Hospital; we were able to get a room.
Thursday, June 08, 2006
Brave
say your name
just your name
and i'm ready to jump
even ready to fall
the way it always was
is no longer good enough
you make me want to be
brave
~nichole nordeman
The Next Day
The morning came and we arrived at Blank at 11am, Grace was hooked up to the Video EEG. She was hooked up and for the first hour or so and we had to mark each time she has a spasm by clicking a button hooked to the EEG system. It almost felt like we were hurting her each time we had to push the button. It was like the trigger used on morphine drips for patients in extreme pain.
We were waiting for Dr. Kabani and went to get something to eat in the cafeteria. When we got back Kabani was there along with a couple residents; teaching hospitals are a great thing and it is awesome that Grace’s condition was able to be used by these Dr’s in training but it does get frustrating to answer the same questions over and over again. You start to wonder if they ever read charts! Perhaps this is part of the learning process.
The crowd of doctors and nurses were gathered around Grace’s bed watching her, there was no room for us. We sat and did the only thing we could do and ate our sandwiches which felt all so weird but it was already 2pm and we needed to eat if we were going to get through this day. They were able to determine that she was defiantly having seizures. They gave Grace a shot of Vitamin B6 this actually relieves seizures in 1% of people with seizures, it didn’t work for Grace.
Kabani managed to schedule Grace’s MRI later in the day and we would be having a spinal tap the next day. The purpose of these two tests was to determine what was causing the seizures.
They gave Grace anesthesia through her IV and after she was out wheeled her down to the MRI. We sat in the waiting room trying to grasp what was coming next.
We met with Dr. Kabani that night and about two hours of debriefing we knew that Grace had Epilepsy. The MRI had shown that Grace’s brain hadn’t formed correctly. Of concern were the corpus callosum and the thickness of the crevices in her frontal part of the brain. What we didn’t know was if what she was a rare and life threatening form of Epilepsy or just Epilepsy. We decided in those two hours to drive to St. Paul, MN the next day in order for Grace to see a Pediatric Epilepsy Specialist.
We were waiting for Dr. Kabani and went to get something to eat in the cafeteria. When we got back Kabani was there along with a couple residents; teaching hospitals are a great thing and it is awesome that Grace’s condition was able to be used by these Dr’s in training but it does get frustrating to answer the same questions over and over again. You start to wonder if they ever read charts! Perhaps this is part of the learning process.
The crowd of doctors and nurses were gathered around Grace’s bed watching her, there was no room for us. We sat and did the only thing we could do and ate our sandwiches which felt all so weird but it was already 2pm and we needed to eat if we were going to get through this day. They were able to determine that she was defiantly having seizures. They gave Grace a shot of Vitamin B6 this actually relieves seizures in 1% of people with seizures, it didn’t work for Grace.
Kabani managed to schedule Grace’s MRI later in the day and we would be having a spinal tap the next day. The purpose of these two tests was to determine what was causing the seizures.
They gave Grace anesthesia through her IV and after she was out wheeled her down to the MRI. We sat in the waiting room trying to grasp what was coming next.
We met with Dr. Kabani that night and about two hours of debriefing we knew that Grace had Epilepsy. The MRI had shown that Grace’s brain hadn’t formed correctly. Of concern were the corpus callosum and the thickness of the crevices in her frontal part of the brain. What we didn’t know was if what she was a rare and life threatening form of Epilepsy or just Epilepsy. We decided in those two hours to drive to St. Paul, MN the next day in order for Grace to see a Pediatric Epilepsy Specialist.
Wednesday, June 07, 2006
Baby's First EEG
Today marked the day of Grace's first EEG. About two weeks ago we noticed that she was having little spasms in which she would tighten her fists and crunch her arms and legs into her body…somewhat curling into the fettle position. We called Iowa Health's My Nurse and they thought it was just a startle reflex as we seemed to notice it primary after she would wake up.
After a week went by and we attempted to startle her on our own and we could not reproduce this “startle reflex” we when to our pediatrician's office, they felt that it was a case of acid reflux. This was difficult to understand as Grace has never been much of a spit-up baby. The thought was that she was spitting up but swallowing/gagging on the spit-up which was causing the spasm or gagging reflex. We started Grace on Prilosec and after a few days of seeing no result and performing our own research on the web on infantile spasms we went back to see Dr. Fornoff. Fornoff was concerned and arranged for us to have an EEG, the results came back abnormal. The results being abnormal and that we need to take Grace to Blank to be admitted for more observation were our only pieces of information. We sat at home the rest of the day worrying and fearing the worse. Late that night Dr. Kabani, Pediatric Neurologist called us to let us know what he was thinking and the immediate plans for Grace. We were to come to Blank at 11am the next day to be admitted; from there Grace would undergo a Video EEG, and MRI of her brain, and a spinal tap. Now it was time to go to sleep and await the next day, good luck.
After a week went by and we attempted to startle her on our own and we could not reproduce this “startle reflex” we when to our pediatrician's office, they felt that it was a case of acid reflux. This was difficult to understand as Grace has never been much of a spit-up baby. The thought was that she was spitting up but swallowing/gagging on the spit-up which was causing the spasm or gagging reflex. We started Grace on Prilosec and after a few days of seeing no result and performing our own research on the web on infantile spasms we went back to see Dr. Fornoff. Fornoff was concerned and arranged for us to have an EEG, the results came back abnormal. The results being abnormal and that we need to take Grace to Blank to be admitted for more observation were our only pieces of information. We sat at home the rest of the day worrying and fearing the worse. Late that night Dr. Kabani, Pediatric Neurologist called us to let us know what he was thinking and the immediate plans for Grace. We were to come to Blank at 11am the next day to be admitted; from there Grace would undergo a Video EEG, and MRI of her brain, and a spinal tap. Now it was time to go to sleep and await the next day, good luck.
Sunday, May 28, 2006
7th Inning Stretch
Grandpa Dale and Grandma Deb got Nathan and I these cubby outfits on one of their baseball trips.
Aunt Heather
This is my Aunt Heather, she lives out in North Carolina but she is moving to Michigan and will be much closer very soon!
Wednesday, May 24, 2006
Rocking Chair
Grandpa Dale in his retirement rocking chair with Nathan and me. This chair is going to get alot of mileage!
Sunday, May 21, 2006
Sunday, May 14, 2006
mmmm Cake
Who says you can't have your cake and eat it too? I'll stick my foot in here and then see if anyone wants to eat my cake. It will be all mine!
Monday, May 08, 2006
Monday, May 01, 2006
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