Struggles!

Let me start with Devynne's procedure.  Sorry I haven't posted in a few weeks.  On 24 Jan 2012, Devynne had her Invasive/Subdural (Internal) EEG.  Surgery went very well, her doctor but 40, yes 40 electrodes on the surface of her brain.  He did this by drilling and removing three nickle sized holes in her right and left Temporal Lobe and in her Frontal lobe.  They had to shave about 2-3 inches back to access the area.  The surgery only lasted 3 hours, not as nerve racking as I thought.  My mom was here with me and I think that made things a lot easier. she's my rock!!  Doctor told me after surgery that she did very well, they will monitor her for a few days.  They would pull her off her medicine and wait for seizures.  He said that on average patients only stayed for 3.5 days but they could keep her up to 30 days.

I was afraid to see her in recovery, thought she's be really swollen, but she looked good.  She was a little swollen but not as bad as I thought.  She was pretty much out of it for a few hours.  That evening when she started waking up, we tried to get her to eat a little and drink a little.  That's didn't work out too good.  She threw up everything she was putting in.  Also that night her head started hurting, she started to cry and got really upset.  She asked me why I did that to her and why I made her have the procedure.  Kind of broke my heart but I knew I was doing the right thing.

Doctor warned me that she would have some leakage.  See the electrodes had wires that stuck out of her skin to be plugged into a computer.  (Sorry I'm jumping around)  She was then monitored for seizure activity.  Oh and I was told she was the Diamond Children's first pediatric subdural EEG patient, they weren't even set up for her.  The hospital had to rent the electrode connection box from the manufacture.  Anyway, because the wires were coming out of her head there was areas where her brain fluid would leak out; which caused major headaches!  AND SHE LEAKED!!  I had to change her pillow cases a few times a day because they were soaked. 

Day 2 was not any better.  Doctor wanted seizures and Dev gave them to him.  She had four grandmal seizures just on that day.  Every time she woke up, she'd seize which meant she would be out of it for hours.  The whole day again didn't eat or drink anything.  But the doctors still didn't put her on fluids.  Mom stayed the night the first night and left late afternoon on day 2.  Devynne had a few visitors as well, my boss, two of my friends came on the first day while we were in the surgical waiting room. then my 1st Sergeant came that evening.  On day 2 a few more friends came and more co-workers.  It was really nice to see so many people cared.  Doc ordered her back on her meds, so naturally I thought this was it...we are going home!! Yay!!! 

Day 3, doc came in first thing in the morning and said the neurologist wanted at least two more seizures.  The reason they put her back on a portion of her meds was because the four seizures she had the day prior weren't localized, they seemed to be coming from both sides and spreading all over her brain.  Putting her back on one of her meds would hopefully shut out the weaker side and cause the more dominate side to seize.

Days 4 was much better, Devynne was awake and starting to eat and drink.  She wasn't going to the bathroom on her own so they decided to cath her.  The doctor ordered vitals to be taken every 4 hours, neuro check every 4 hours by the RN and bladder scans every 4 hours.  If she had 300 or more cc's of fluid in her bladder they had to cath her.  Oh and the vitals and neuro scans were not at the same time!  This poor kid was woke up several times every few hours, she didn't get much sleep.  This day Devynne refused pain meds, said she wasn't hurting at all.  Shocking seeing that she just had her skull drilled into 3 1/2 days ago.  That's my trooper!!

Day 5 was Saturday, mom came up to give me a break and made me go home to get some rest.  Oh, it was well needed rest!!  Took a nice long shower, meet my friend Tasha and her two kids for lunch and went back to the hospital well rested.

Day 6, still no more seizures.  I decided to let her watch a scary movie, it was called "The Ward", it was about a girl that was killed in a mental hospital (you need to know this so understand the funny part)...keep in mind this child LOVES scary movies!!  The movie just got quiet and I just fell asleep when all of the sudden the movie made a loud noise and Devynne screamed out (which she never does no matter what happens in the movie).  I asked what happened and while she was laughing she said the dead girl jumped out and scared her.  I laid

The next few days came and went, visitors came by, Dev made friends with the nurses but no seizures. 

Day 11 (yes 11 days), doctor came in that morning and said they had enough information to make a decision and the electrodes were going to be removed later that evening.  I was told that at bedside the doctor would sedate her then remove the electrodes, if they got stuck they would bring her to the OR and have them removed there.  I had a banquet the following day that I needed to get ready for, since the doctor wasn't coming until later that evening I decided to have a friend's daughter come sit with Devynne while I went home and gathered everything I needed.  About half an hour after I left I got a text saying the doctor was there and they were removing the electrodes.  I tried my hardest to get back as soon as I could.  When I arrived they were done and the doctor was gone.  I walked in the room and Devynne looked like she was in pain and had been crying pretty hard, I asked what happened....remember they were going to sedate her to remove the electrodes.  The nurse informed me that the doctor gave Devynne 4 milligrams of Ativan (spelling) which is enough to stop her heart, and 4 doses of Morphine, enough to put a grown man down; but this wasn't enough to "sedate" my child.  Yes, that was their definition of sedation!  The doctor removed a few of the electrodes but two got stuck, instead of taking her to the OR like I was told, he yanked the stuck electrodes out of her head and she felt EVERYTHING!!  The nurse said that she screamed so loud some of the nurses heard her on the other side of the floor.  Boy was I mad!!  I asked to speak with doctor regarding what happened and he sent his resident.  The resident of course made it sound like it wasn't a big deal but I did let him know that this was unacceptable!  I wasn't there to console my child and this was the worse thing that could have happened.  It was so unsettling that the Child Life Specialist, Amy, came in and gave Devynne a brand new Nintendo DSI with her favorite game; said she had been through so much those past 11 days and mostly right then that they had to do something for her. 

Devynne was released the following day.  Since then she's been resting and recovering at home.  On Monday we had a little scare, on our way to breakfast she started complaining of double vision then said her eyes were moving up and down, I looked and sure enough they were.  I called the nurse and she said to get her to the ER right away.  We went in and they got her back quickly!  Doctor ordered a CT Scan to check for complications from the removal, like blood.  He also ordered blood work to make sure she didn't have an infection; all came back fine.  I took her to my work on Tuesday and everyone there was really surprised how good she looked.  She didn't even act like she just had minor brain surgery.

The past few days have been pretty good.  I took her to get her hair cut, Marissa, my hair dresser took Devynne and made her look beautiful!  She fixed her hair in a way that you couldn't see her scars or her shaved area.  And to top it all off, she wouldn't even charge me for the cut.  Devynne's follow up is on Tuesday, hopefully we will get the results and get things moving.

I want to thank all the staff at UMC and all my friends, co-workers and especially my mom!!