Monday, October 27, 2008

Ana's cuteness and Gracie update

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!

Wednesday, October 22, 2008

Still in hospital

My brain is foggy and I feel as if I could have a seizure at the drop of a hat after 6 days of keeping Gracie awake and inciting seizures. She did have two seizures for us each time after I kept her up for most of the night off her meds. She also got a sedated MRI which took her 16 hours to wake up from! All this gives us some good data for moving forward with more definitively treating her seizures. I'll keep you posted!


Gracie did have a seizure last night. I have never been so happy to see a seizure. I couldn't believe that we got a seizure when we wanted one! She was taken off her meds entirely and I kept her up until midnight reading, watching TV, and tickling. Then, I snuggled her in to bed, but she couldn't fall asleep! Oh my! She struggle to sleep for and hour and a half and then, just after she dozed off on my lap, she had a seizure. I leapt out of bed and joyously pushed the seizure button. Her whole seizure was captured on the EEG and video with full monitoring. Praise God!

The odd thing was that, despite ativan to stop her seizure, she didn't fall asleep for over 2 hours after the seizure! She laid there with her eyes wide open, looking around, occasionally yelling out... very strange. But my comfort was that she was on the monitors, so I eventually caught a few hours of sleep.

She's now in the recovery room after a sedated MRI which will give us lots of information about what caused her cerebral palsy and, of course, more info about where her seizures are coming from. All this is working towards possible surgery.

We're still in the hospital now hoping for a second seizure. We'll probably be in till sunday afternoon or monday.

Long Term Monitoring

We're admitted to Children's Hospital (Boston). Gracie was so incredibly brave about 3 IV attempts, blood draw, and electrode placement on her exquisitely sensitive scalp. She has, of course, won everyone over and has many new friends. I left the room for a few minutes this morning and came back to a crowd in and around her room all laughing with her contagious laugh! The joy of the Lord shines through that child! :)
Now, we are praying for a good seizure, or more, if necessary! We really want to capture a seizure on the EEG, really really! We may also be able to get the sedated MRI done while here, which would be fantastic!

Wednesday, October 15, 2008

the sleep study adventure

Well, friends... the sleep study ending up to be more of an adventure than bargained for... and not of Gracie's doing!

I was to meet them at the hospital since I was at a conference in Boston. So, I walked over to the hospital from Hynes Convention Center and arrived with plenty of time (5:30pm) ... to get phone calls from Josh... "I'm stuck in traffic (5:30pm)..." ... "I'm still stuck in Red Sox game traffic (6:00pm)..." ... "Okay, I got off 93 and I made it onto Storrow Drive..." ... "Umm... I don't really know where I'm going, I must have missed something... it looks like I'm headed out of Boston now (6:15pm) ..." ... "Someone ran me off the road and I blew a tire and bent the rim and I can't drive the car anymore... and I don't know where I am (6:30pm)..."

WHAT?! umm... (appointment is at 7:30pm)

So, I loaded myself back up with the breastpump (I had been out all day), my backpack with my laptop in it, and the now cold food that I had ordered for dinner in anticipation of a leasurely dinner as a family.

I wandered into the lobby of Children's and spoke to the front desk folks, explaining my crazy situation... "HI, ummm... my daughter has a sleep study tonight, but she's stuck across town somewhere with my husband in a car that is broken down... I'm not sure what to do? and he doesn't know where he is...?" They were so kind and eventually the social worker arranged for a taxi to take me to Josh and bring me and Gracie back.

The taxi came, looking for someone with a completely different name but the same account number, so we decided that he must be for me and off we went... like detectives, piecing together what little Josh could tell us in the darkness of Boston, not able to leave the car to explore his surroundings since he had both Ana and Gracie (who were, by now, starving little munchkins!) and no double stroller since that was in our van which broke down two weeks ago and has been awaiting a new transmission ever since. "I see some bright lights, like a soccer field... I see a square sign with the number 2 on it... I'm near the only place on the Charles River that rents boast..." oh boy! The Haitian taxi driver was greatly amused and enjoyed the challenge, I believe!

We actually found Josh and the car and the girls (7:30pm) and Josh had in the meantime gotten the (flat) spare tire on. He was able to aggressive follow the aggressive taxi back to Children's. I ran G up to the 9th floor to start her sleep study, completely frazzled, exhausted, and stressed.

It seemed not to matter that we were significantly late for the study as the kind people started hooking her up to all the equipment. Gracie was excited by the new environment and the attention... UNTIL it became evident that all 30+(?) electrodes had to be pasted onto her SCALP... she quickly figured out that this kind man was going to keep messing with her scalp and she became very unhappy. (as you know, her scalp is "no-touchy!!!!" realm.. she freaks out with any touch of her scalp, which is why I had to cut her hair. I was, however, grateful for short hair during this study!)

She was very patient, but by the end of 45 minutes of pasting, she was crying and even putting the electrodes onto her legs was a challenge. Not the easiest patient in the world!

By 9:30pm I left with Ana to SLOWLY head to NH driving our car with the doughnut tire on. By 11:00pm, I plunked the grouchy Ana into the crib to start her new training routine (in Gracie's room) and quickly fell to sleep only to get up the routine two more times with Ana during the night. Gracie slept very poorly and was awoken at 6:00am to take the electrodes back off, but she was so exhausted that they all came off with barely an opening of her eyes. I meant to get back down to Children's by 7:00am (to avoid traffic) but was too exhausted and ended up heading OUT at 7:00am (still on the doughnut tire) and reaching Children's by 8:30am (not bad!) with enough time to eat breakfast and get us to Gracie's appointment with the cerebral palsy clinic. While in the room waiting for the doctor, Josh spilled his tea all over the floor and Ana cut her fingers, adding blood to the floor, while Gracie snotted and drooled all over the place, hilariously rolling (and smearing) all over the casting table... oh my... the Rattins are in house! (I hope they decontaminated the room!)

(The sleep study results will take at least a week, apparently, so we'll let you know when we have some results!)

The CP clinic was with an orthopaedic surgeon who knows CP well. We were very pleased. We got xrays of hips and spine and she has mild scoliosis (from her tight hamstrings) (less than 10%) and her hips are partially out of socket (due to tight muscles), but so far, so good and he said that she looks good overall. She will likely be a candidate for botox injections of hamstrings, gastrocs, and adductors (all leg muscles). She also needs a night time brace for her right arm/hand and needs to wear her leg braces at night... so much for improving her sleep!!

we finally made it home, exhausted, but behind in our work, of course. We start the whole adventure again next week for her long term monitoring for video EEG (for seizures), hopefully with less car woes and a bit less exhaustion!

God is in charge and good!

Monday, October 13, 2008

Gracie's busy weeks

Gracie has a sleep study tomorrow - that should be interesting seeing as she doesn't really sleep well lately (most likely due to mega doses of meds)! But I'm eager to get the results and see what's going on at night and this is the next step to getting an MRI which is A step toward possible epilepsy surgery which I'm now actually HOPING that she'll qualify for. The thought of neurosurgery (even for a doctor) is terrifying, but as it could cure her, it would certainly improve her quality of life!
She's now up to double the max recommended dose of Keppra and a high dose of lamictal and still had a seizure on Friday. We're starting Vitamin B6 which has some effect for the mood swings that come with keppra and also has some anti-seizure effect. We also put most of her lamictal dose in the morning to help with her insomnia... next week is her long term monitoring video EEG!

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