I'll start with a story of Ana's cuteness. Last night Amy was driving me and Ana home from Boston and Ana was so silent in the back seat that we thought she must have fallen asleep. Suddenly, Amy sneezed twice and from the back seat we hear a little "choooo!" "choooo!" - she was imitating Amy's sneeze - TWICE! ;-) she's so adorable as she imitates everything!
Yesterday when Ana got to the hospital to see Gracie she just kept kissing her and kissing her - she definitely misses romping with her big sister!
I slept at home last night after 5 nights and days of being awake with Gracie, I had to get some sleep before work today. Ana slept through the night (as far as I know) and greeted me with a cheerful "hi!" when I got her out of the crib this AM. She imediately started looking around for "Dad-deee" and "Dad-douuu" (gracie?) but certainly enjoyed having mama home.
Gracie apparently slept through the night at the hospital. We've had quite a run of it, here's the summary:
We went in on Tuesday to start a study on her seizures, by Thursday night, we took her off her meds and I kept her up all night and sure enough she had a seizure. Friday she went for an MRI of her brain which required taking all the leads off her head, shampooing twice to get the goop out, and then giving her sedation. She did spend 30 minutes OUT of her room in the playroom that day but otherwise was confined to quarters for the entire hospital stay. Josh took her down for the MRI at about 2pm and they were gone till 8 or 9 pm - she wouldn't wake up! The recovery room finally released her to full monitoring on the floor even though she was essentially unresponsive. She slept through all the leads being put back on her scalp and all the way until 9am the next morning (16 hours) despite the nurse doing all kinds of things to her to get her to open her eyes! ha!
She finally woke up on Saturday and some friends came to help me wear her out as I was completely worn out myself and had no energy left to use up her energy. I then kept her up Saturday night and even when I tried to get her to sleep, she couldn't fall asleep till after 4am on Sunday due to her itchy head (under a big sock covering all the electrodes on her scalp) and was actually quite hyper. She didn't have a seizure much to my chagrin (did I torture the two of us for nothing???) so I woke her up around 8am (with lots of work) and she ate a few bites of breakfast and slowly woke up ... until around 10am on Sunday morning when she had a nice seizure in the presence of all her doctors. yay! So she had two definite seizures on monitoring, one short tiny seizure that they may not be able to see well, and got her MRI done.
She got a different medicine (ativan) this time than what we use at home to stop her seizures and it gave her a dramatic panic attack. I've never seen her like that. She pulled off all the monitoring equipment and would have pulled of her head leads if I hadn't been holding her. She was screaming and frantic and shaking. I was so worried! I finally got her to calm down and got her to sleep and she woke up 6 hours later okay.
She's back on meds now, but her schedule is all off, so it'll be a long week or two getting her back on schedule.
She was such a brave kid - didn't cry with any of the procedures, including needles!
We learned:
1) Don't use ativan!!!
2) Don't give her a double dose of anesthesia!!
3) She WILL have a seizure if she misses her meds and stays up all night - no youth group lock-ins in her future!
4) The strange things that she does that we didn't think are seizures, are not seizures. Only the things that we thought are seizures are seizures. (does that make sense?)
5) It looks like she had hypoxic birth trauma which is why she is spastic in all extremities and has seizures (we always assumed this, but now we know and we don't have to pursue a whole work up to see what she had strokes).
6) Her drug levels in her blood are in the normal range despite the high doses. I guess her liver works very efficiently despite the hepatitis A in 2006/7!
Next steps:
I guess we are in for more hospitalizations like this to continue the work up... oh dear. It was miserable for me, although Gracie remained fairly well amused with the constant one on one attention day and night! All this is to see if she would benefit from epilepsy brain surgery. So far it looks promising, but her seizures start deep in her brain so the start of them is very hard to see on EEG which only picks up the top few millimeters of brain activity.
Josh and Gracie are still at the hospital, planning on coming home tonight. I go to work today so I'm trying to tidy the house, mail out my midterm for my one MPH course that I'm barely surviving, and spend a little time with the adorable Banaaaaanas.
We do appreciate your prayers as we readjust!
Yesterday when Ana got to the hospital to see Gracie she just kept kissing her and kissing her - she definitely misses romping with her big sister!
I slept at home last night after 5 nights and days of being awake with Gracie, I had to get some sleep before work today. Ana slept through the night (as far as I know) and greeted me with a cheerful "hi!" when I got her out of the crib this AM. She imediately started looking around for "Dad-deee" and "Dad-douuu" (gracie?) but certainly enjoyed having mama home.
Gracie apparently slept through the night at the hospital. We've had quite a run of it, here's the summary:
We went in on Tuesday to start a study on her seizures, by Thursday night, we took her off her meds and I kept her up all night and sure enough she had a seizure. Friday she went for an MRI of her brain which required taking all the leads off her head, shampooing twice to get the goop out, and then giving her sedation. She did spend 30 minutes OUT of her room in the playroom that day but otherwise was confined to quarters for the entire hospital stay. Josh took her down for the MRI at about 2pm and they were gone till 8 or 9 pm - she wouldn't wake up! The recovery room finally released her to full monitoring on the floor even though she was essentially unresponsive. She slept through all the leads being put back on her scalp and all the way until 9am the next morning (16 hours) despite the nurse doing all kinds of things to her to get her to open her eyes! ha!
She finally woke up on Saturday and some friends came to help me wear her out as I was completely worn out myself and had no energy left to use up her energy. I then kept her up Saturday night and even when I tried to get her to sleep, she couldn't fall asleep till after 4am on Sunday due to her itchy head (under a big sock covering all the electrodes on her scalp) and was actually quite hyper. She didn't have a seizure much to my chagrin (did I torture the two of us for nothing???) so I woke her up around 8am (with lots of work) and she ate a few bites of breakfast and slowly woke up ... until around 10am on Sunday morning when she had a nice seizure in the presence of all her doctors. yay! So she had two definite seizures on monitoring, one short tiny seizure that they may not be able to see well, and got her MRI done.
She got a different medicine (ativan) this time than what we use at home to stop her seizures and it gave her a dramatic panic attack. I've never seen her like that. She pulled off all the monitoring equipment and would have pulled of her head leads if I hadn't been holding her. She was screaming and frantic and shaking. I was so worried! I finally got her to calm down and got her to sleep and she woke up 6 hours later okay.
She's back on meds now, but her schedule is all off, so it'll be a long week or two getting her back on schedule.
She was such a brave kid - didn't cry with any of the procedures, including needles!
We learned:
1) Don't use ativan!!!
2) Don't give her a double dose of anesthesia!!
3) She WILL have a seizure if she misses her meds and stays up all night - no youth group lock-ins in her future!
4) The strange things that she does that we didn't think are seizures, are not seizures. Only the things that we thought are seizures are seizures. (does that make sense?)
5) It looks like she had hypoxic birth trauma which is why she is spastic in all extremities and has seizures (we always assumed this, but now we know and we don't have to pursue a whole work up to see what she had strokes).
6) Her drug levels in her blood are in the normal range despite the high doses. I guess her liver works very efficiently despite the hepatitis A in 2006/7!
Next steps:
I guess we are in for more hospitalizations like this to continue the work up... oh dear. It was miserable for me, although Gracie remained fairly well amused with the constant one on one attention day and night! All this is to see if she would benefit from epilepsy brain surgery. So far it looks promising, but her seizures start deep in her brain so the start of them is very hard to see on EEG which only picks up the top few millimeters of brain activity.
Josh and Gracie are still at the hospital, planning on coming home tonight. I go to work today so I'm trying to tidy the house, mail out my midterm for my one MPH course that I'm barely surviving, and spend a little time with the adorable Banaaaaanas.
We do appreciate your prayers as we readjust!
Comments
- Debbie Grorud