Sunday, January 10, 2010
When we see our kids in the state of panic we run to them..we comfort them with our signature cuddles and kiss their little forheads and tell them that its OK...
Seeing Madie getting wrapped up for her 22 hour EEG was rough. she cried to the point of exhaustion. she cried like she was so scared. I cried with her!
SOOOOO here we are in Detroit. A smooth fight in. We were staying at Hubbys Aunt and Uncle in harrison township so the room and board were free.
After all that she promptly passed out in her stroller. :( We arrived in our room and there was no crib ready for her.... We must have waited like 45 minutes for a crib!
She was in much better spirts as the day wore on. The staff at the hospital could not be nicer..
The food at the hospital was so gross but we ate...and Auntie Cathie and Uncle Chuck were ready with home cooked meals when we returned. THE BEST PART!
the Accomodations...one of us on the chair of death and one on the narrowest couch in the world! Hubby was up more than I was but I got up at 2am and I was pumped to take on the rest of the shift...then just as Miles was snoring...madie was UP..happy as a clam in her bed (and I was tired)..from about 230am-4amish...I changed her diaper and played with her..she kept me up for sure..so who was I to argue with her..lol
It was funny to watch the EEG when she laughed really hard or made her funny noises..
Daddy makes the tears go away. :) Awww
Sedation after PET scan was not as bad as I thought...seriously she was out of it for 2 hours...then back to herself..not helping the sleep deprived mom and dad! LOL
How can I describe this trip...
Well Ill begin with the beginning...
The Wrapping was bad as I mentioned already but then when we were settled in our room things were quiet. We asked the nurse for another cot so we could sleep and she was like "uh...one of you has to be awake"
Well we kinda knew that but...it was worth a try I guess..
When all was said and done it was Results Time!
Friday afternoon we head back for the final stretch of our journey and were anxiously waiting for Dr Seizure to come and see us..
Well we waited in the room and then suddenly a desheveled man comes in and says that the doctor is running behind and that he will give us tickets to the cafeteria so we can buy some lunch and come back...
OK kinda annoyed but what the hell can I do...
We head down with one of the nurses who has the cards and wants to come to make sure the things work OK...gawd.
Well we get some more horrible hot dogs and fries and a couple drinks and sit for a few...at this time madie has fallen asleep in her stroller anyhoo...
We get back to the 3rd floor and Dr is ready to see us..
We head into another room with a conference table and a computer that is displaying Madies PET scan pictures..
Along with this Asian Doctor I find myself reeeeally opening up my ears to understand and hear when he speaks..
The Doctor begins to explain the layers of madies brain..saying they look really good...normal in fact...that according to the scan her seizures are in fact in both sides of her brain...there was a slight abnormality of glucose absorbtion in the middle but nothing he really freaked out about..he went thru some more of the layers and was saying that the motor cortex looks good...cognitive function looks fine...all kinds of stuff...JUST LOOKED FINE!
Soooooo I ask...what is madies DEAL??
He tells us that he is sorry that Madie is not a surgical candidate..which is GOOD right?? But if she WAS we could nab these damn seizures!!
The Doctor then said that he is certainly convinced that this is a genetic problem...something that is related to her having her spasms early on..YA THINK!??
We graciously gave some of madies blood to support his research to find something geneticly linked...(the blood test was free by the way)
He promised to keep us posted on what he may or may not find in madies blood test..
He then explained what he saw in her EEG and was confident that she is in fact having seizures that are combination of Atonics and Myclonics...when she falls over she looses mucsle controll for a second...I have been calling them Drops...easier said I guess..
Mild Hyps in there as well..but not ALL the time...which was kinda confusing to me..so she IS or ISNT having Spasms?? (I asked)
He tells me NO.
Madie at this time was awake and full of smiles for the Doctor which was a relief for us..:)
There were 16 Drops in her EEG...I tried real hard to push that button but most of the time late at night it ended up on the floor or burried in my blanket. I was hoping that he did not see me changing into my PJ pants on camera! LOL!! I was like "OH no!" that was on camera!!
Then there was MED talk...well he said that she is at good levels of her Valproric Acid so we cannot go up on that...and then he asked about her Banzel..
I can go back and forth with Banzel really...sometimes I feel like its working then sometimes I am ready to throw in the towel on that stuff...I feel if we increase it her appetite will decrease and she will be too sleepy..
He was gung ho on Clozapam (not Clonopin)...cant remember...
Says we can mail order it from Canada at a 1.00 a pill...says the US wont take it on cause its so cheap. We would begin her at quarter of a tab a day..(how the heck am I supposed to break that crap up???) I bet they have pill cutters out there.
Says that at low dose should not have many if any side effects on her. I was not quite sold on that but whatever..ok ok
His recomendations will be sent to Our Neuro in Hartford and I will get a copy etc etc..
He was sorry he could not do more for madie.
Can I say we got a good trip out of this oh absolutly...but we are still left with no reason WHY madie seizes..
We anxiously await the genetic tests he will run for us.
Madie was so brave. The Staff was so nice and made us feel less anxious..the PET scan guy was a hoot was well..(omar? was his name?)
We are so happy to be home now..Madie refused to eat her bottle last night and promtly passed out in her own bed..but woke to eat 2!! LOL
Today I get back into the old same ol same ol...heading to the grocery store for milk and doing laundry as we have come home with a large bag of it.
Hubby watches the Pats game with huge hopes of them winning to get closer to the super bowl...LOL
I guess that is all...if I remember something I will post it.
I have all the pictures on my facebook page to see as well :)
Posted by Jamie at 9:35 AM