Never would I have ever imagined that things would go as smoothly as they did...even with a little mishap along the way.
First of all, we were able to do the EEG locally. There was no worrying about plane trips or places to stay. The hospital, St. Louis Children's Hospital, is only 20 minutes from our house. I, of course, still overpacked and worried myself crazy the night before.
I was immediately impressed when we walked into our room. It was a private, spacious and well lit room...the nicest hospital room we have ever stayed in by far. We even had a view as we could see the Gateway Arch. Everyone we met was so incredibly nice...the nurses, EEG technician, in-house pediatrician, epileptologist, etc. I was amazed at having so many people check in on us.
But the best part has yet to come...for all of you who have been through a 24 hour video EEG or longer you will appreciate this. In the ceiling, there was a little dome with a camera in it. In another room, there was a technician who monitored the camera and EEG reading at all times. This allowed Sophie to move freely about the ENTIRE ROOM!!! The cord was so long that she was even able to step right outside the room. She was given a backpack to wear to hold the box that all the wires were attached to. At every other hospital, we were confined to the bed or one foot beside the bed in order to stay within camera view. No one ever checked in on us. If a lead came loose on Sophie's head, we had to notice it on the EEG reading and notify someone. There was no backpack so we had to constantly be hunched over Sophie so that every time she moved one of the wires didn't pop out of the box.
The following morning, the epileptologist reviewed the EEG and then spent at least 20 minutes explaining everything to us and answered all of our questions. She seemed to genuinely care and took the time to review Sophie's previous MRI and PETscan. Which amazed me since Sophie is not her patient nor is she a patient of a doctor at this hospital. They took a complete history of Sophie including every treatment she has ever tried. The epileptologist recommended trying felbatol and explained all the risk and side effects to us.
Our one minor mishap... Sophie loves to throw her body around like crazy. She thinks it is funny. She gets in these moods and becomes a complete wet noodle. It is completely on purpose because she only does it when she is in a really silly mood. So as I was waiting at the elevators to head down to the cafeteria the second morning we were there, I heard a loud scream. I just knew it was Sophie. So I headed back to the room (which is around a corner, down a hall and around another corner...that is how loud she was crying). When I walked in the room, Brandon was holding her and she was sobbing. He said that he was holding her hand and she just threw her body backwards and he heard a pop. So I held her, thinking that once she calmed down that she was going to be okay. Well, she refused to move that arm. I knew she had to be in a lot of pain because she has a very high pain threshold. Brandon got the nurse, who got the resident pediatrician, who then got the head pediatrician. She examined Sophie's arm, moved it around a bit while Sophie screamed her head off. She said that Sophie's elbow was popped out of socket and that she just popped it back in. She said that if she still wasn't moving it around within a few minutes that she would need x-rays. Well, within 5 minutes, Sophie was back to normal like nothing had ever happened.
Special thanks to Grandma Debbie for taking such great care of Elsa. She even brought her up to the hospital for a few hours which Sophie absolutely loved. It was calming to know that Elsa was in such great hands.
Special thanks also to Sophie's old ABA therapist, Jen. She came to visit us in the hospital and brought Sophie her favorite chips and a book. Sophie was excited to see her and even showed off some new words for her. Jen always had a way of getting Sophie to do things that no one else could.
First of all, we were able to do the EEG locally. There was no worrying about plane trips or places to stay. The hospital, St. Louis Children's Hospital, is only 20 minutes from our house. I, of course, still overpacked and worried myself crazy the night before.
I was immediately impressed when we walked into our room. It was a private, spacious and well lit room...the nicest hospital room we have ever stayed in by far. We even had a view as we could see the Gateway Arch. Everyone we met was so incredibly nice...the nurses, EEG technician, in-house pediatrician, epileptologist, etc. I was amazed at having so many people check in on us.
But the best part has yet to come...for all of you who have been through a 24 hour video EEG or longer you will appreciate this. In the ceiling, there was a little dome with a camera in it. In another room, there was a technician who monitored the camera and EEG reading at all times. This allowed Sophie to move freely about the ENTIRE ROOM!!! The cord was so long that she was even able to step right outside the room. She was given a backpack to wear to hold the box that all the wires were attached to. At every other hospital, we were confined to the bed or one foot beside the bed in order to stay within camera view. No one ever checked in on us. If a lead came loose on Sophie's head, we had to notice it on the EEG reading and notify someone. There was no backpack so we had to constantly be hunched over Sophie so that every time she moved one of the wires didn't pop out of the box.
The following morning, the epileptologist reviewed the EEG and then spent at least 20 minutes explaining everything to us and answered all of our questions. She seemed to genuinely care and took the time to review Sophie's previous MRI and PETscan. Which amazed me since Sophie is not her patient nor is she a patient of a doctor at this hospital. They took a complete history of Sophie including every treatment she has ever tried. The epileptologist recommended trying felbatol and explained all the risk and side effects to us.
Our one minor mishap... Sophie loves to throw her body around like crazy. She thinks it is funny. She gets in these moods and becomes a complete wet noodle. It is completely on purpose because she only does it when she is in a really silly mood. So as I was waiting at the elevators to head down to the cafeteria the second morning we were there, I heard a loud scream. I just knew it was Sophie. So I headed back to the room (which is around a corner, down a hall and around another corner...that is how loud she was crying). When I walked in the room, Brandon was holding her and she was sobbing. He said that he was holding her hand and she just threw her body backwards and he heard a pop. So I held her, thinking that once she calmed down that she was going to be okay. Well, she refused to move that arm. I knew she had to be in a lot of pain because she has a very high pain threshold. Brandon got the nurse, who got the resident pediatrician, who then got the head pediatrician. She examined Sophie's arm, moved it around a bit while Sophie screamed her head off. She said that Sophie's elbow was popped out of socket and that she just popped it back in. She said that if she still wasn't moving it around within a few minutes that she would need x-rays. Well, within 5 minutes, Sophie was back to normal like nothing had ever happened.
Special thanks to Grandma Debbie for taking such great care of Elsa. She even brought her up to the hospital for a few hours which Sophie absolutely loved. It was calming to know that Elsa was in such great hands.
Special thanks also to Sophie's old ABA therapist, Jen. She came to visit us in the hospital and brought Sophie her favorite chips and a book. Sophie was excited to see her and even showed off some new words for her. Jen always had a way of getting Sophie to do things that no one else could.
6 comments:
I am SO glad you had a positive EEG experience! In Boston we always get a backpack to amke things easier. The camera system there sounds a bit better though. Austin has always had free reign of the room, but we have to re-aim the camera so he's in view.
Question... can YOU see the EEG reading while in the room? If so, that's really cool.
Not this time. We can in Detroit. But I hated watching the EEG. As it is always abnormal with spike waves and discharges...staring at you all day long. Not a fun thing to watch.
Glad things went to so well! Sounds like a really nice hospital. Sophie is growing so much! She is precious!
Glad things went to so well! Sounds like a really nice hospital. Sophie is growing so much! She is precious!
Aside from the "elbow incident" it sounds like Sophie might have considered this more of an adventure than another confining and miserable hospital experience.
I guess Spring break is over and everyone is back to their routine. Enjoy the weather.
Love,
Barb
Hmmmm...could there be a new 20 minutes away doctor in the mix? Sounds like you found a great one!
I feel like such a complaining wretch now! Trev has always been able to move around freely. But like Jen...we have to man the camera. And it's a pain in the butt! And we complain...like it's..well...a pain in the butt! *smile*
Sophie looks like such a big girl in the pics.
And I was MORTIPHIED about her elbow! My word...
Wish us luck...PET tomorrow...in-patient VEEG next week...yeah...
...danielle
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