Tuesday, December 4, 2012

Our Trip to the EMU

First of all I want to say thanks to all of you who have been praying hard for Abby.  It was a long week and we have more appointments coming up in 2 weeks. 

I posted updates on Facebook while we were there but I wanted to give some more details on here-not just for my readers but as a record for us too.

We arrived in Memphis Sunday night because our MRI was scheduled so early for Monday morning.  I overslept and we were late!  So embarrassing.  But I was amazed at how quickly I was able to get us ready, packed, and over to Le Bonheur :)  The MRI went smoothly-it is always so hard to watch her go under anesthesia.  Unfortunately the IV in her left hand came out and they had to re-stick her in her right hand.  After the MRI we got settled in to our room and the EEG was hooked up.  She had a rainbow ponytail of wires haha!  While on the EEG monitoring we had to stay in our room.  They have video surveillance so they can record the 'outside' of the seizure as well as the 'inside'.  There was a playroom down the hall that she could go to.  It had a Wii which was a treat for both of us-we thoroughly enjoyed the Dance Party!  So did the nurses who were watching haha!

Tuesday morning we got the news that Abby's tumor was stable.  Praise the Lord!  I never cease to be amazed at His power!  He has truly performed a miracle in her life!  It was such a relief.  Like a huge weight was lifted!

Tuesday Abby had to undergo a SPECT.  This is when they inject a radioactive isotope during a seizure.  It travels to the area of the brain where the seizure is coming from and 'lights it up'.  They do a scan of the brain after the injection.  But it has to be done during a seizure.  And between the hours of 8 am and 1 pm.  And Abby was NPO because they were going to sedate her during the scan.  And she got hungry around 9 am.  It was a long morning.  She couldn't color or anything like that because of the IV, she couldn't leave the room, and she was hungry.  We did a lot of I Spy.  Thankfully the hospital has lots of movies too!  Abby kept saying "I wish I would have a seizure so I could eat." At 1 pm the nuclear med tech came in and told us they would do the baseline injection (they have to inject and scan without seizure for comparison).  The tech injected her, walked out, and about 1 minute later Abby had a seizure.  I hit the button (there is a button you push during seizure) and yelled but it was too late :( I could have cried.  The tech thought Abby was capable of laying still long enough for the scan so she didn't have to be sedated.  That was awesome!  I was so glad she didn't have to be put under! I was so proud of Abby while she laid there as still as a statue!  And then she got to eat!  Woohoo!

Tuesday afternoon the nurses held a little 'seizure info party' and talked to us about all things seizure-safety, medicine, school, etc.  It was nice to be around other moms who are dealing with this and to get more information.  I got to ask some questions that had been on my mind and see how others cope.  I am thankful they did that for us!

Wednesday she had to do the SPECT again.  Thankfully though she could eat since she wasn't going to be sedated!  Around 8:30 am I got a phone call and realized I was out of coffee.  I walked a few doors down to the coffee pot while on the phone.  I had the thought that she would probably have a seizure while I was gone.  Sure enough!  I walked in and could see the look on her face that something was wrong.  I dropped the phone (not my coffee!), yelled, and pushed the button.  The tech was in there within seconds and did the injection.  Then we went down for another scan.  She was a rock star at being still!

That afternoon Abby had another test called a MEG.  They added some electrodes to her head and put this huge helmet on her.  She had to lay still again inside a room that looked like a bank vault.  I had to leave her all by herself :( But there were cameras and speakers so the doctor and tech could keep an eye on her.  The doctor and tech were awesome!  I think they were quite fond of Abby too.  The MEG basically maps her brain-where her language center and motor center are located.  After the MEG she was able to have the IV removed. 

On Thursday we were told we would get to go home that afternoon!  They took off the electrodes and she was able to take a shower.  Then off for another test!  This one was called a TMS.  It also mapped her motor and language centers. 

All of these tests are very complicated to 'read' so we left Le Bonheur without the results.  Our doctor decided to add another medication for Abby.  This one is called lamictal.  The worst side effect with this is an allergic reaction that leads to a terrible rash.  Hopefully she will be able to take it!

Le Bonheur was wonderful to us-again.  Our nurses, techs, and doctors were phenomenal!  I loved them all and became attached to a few!  The child life specialist kept us stocked with books, puzzles, games, etc.  The nurses babied her-and me!  I can't put into words what it meant to us to be so well taken care of!  I felt like God just reached down and arranged things perfectly for us-He made sure we had the best care!  So many at that hospital seemed to go out of their way to make life easier for us.  And so many volunteers!  One day some volunteers came around with stuffed animals and books-two of Abby's very favorite things.  Another day they brought special snacks and drinks for us both and stickers and toys.  She also got to choose from a treasure box after her TMS-surprise she picked a stuffed animal haha-which happened to be a bear named Abby!  It was great as far as hospital stays go.  Now the laundry situation (I had to ride the elevators to find one that was empty and worked, twice) and cafeteria (not much to choose from) did leave me a little stressed but all the other great things made up for it. 

Another blessing while we were there-Abby made a new friend.  Her name is Sarah and she is 8.  They have a lot in common.  Both girls have the same type of tumor (but on opposite sides), same kind of surgery, and same surgeon.  Both are patients at St. Jude and both are having persistent seizures.  They got to play together in the playroom twice.  It was so amazing to watch these two precious girls with heads full of wires just having a ball together!  And I got to chat with her mother about all the things that go along with tumors, surgery, and seizures.  It was so nice.  We exchanged  info and have already been in touch.  Abby says that Sarah is her best friend.  She thinks its so neat that there is another little girl out there with the same tumor.  The nurses felt like God had lined it all up for them to meet-I have to say that I agree!  I don't think it was a coincidence!

We are home now trying to enjoy life and Christmas preparations before our next trip to St. Jude in a few weeks.  She will have another MRI at St Jude-this one is called a functional MRI.  I think she will stay awake for this one.  We have eye, neuropsychology, OT, PT, neuro-oncology, and neurology appointments.  It will be another long week! 

Please pray that Abby responds well to the new medicine and that God gives our doctors wisdom as to the best course of treatment for Abby.