Thursday, November 10, 2011

July 14, 2011

Today is the day for the upper GI/small bowel.  They said they would be there to pick her up about 8:00 am and I could expect it to take 4-5 hours.  UGH!!!!!!  It was awful.  She had to drink that contrast while they xrayed her.  The Dr. did say she had some light reflux but not much.  But now she had to drink a lot more contrast for the small bowel.  They would take xrays every 30 minutes to an hour and we had to wait for the contrast to pass through the small bowel.  Keelie got very anxious because she had to sit still.  She was in this little infant bed rolling cart thing.  It was too small for her but they said she had to stay in it.  After a little while I got her out and let her walk around and play a little.  After playing a little I put her back in her cart and she fell asleep in that tiny excuse of a bed.  So we finally finished and got back to the room around 1:30.  My cousin Katie went to McAlister's and brought us some lunch.  I missed her but my food was waiting on me when we returned.  I went to the kitchen to eat because they thought Keelie might have an MRI later in the afternoon and she couldn't eat.  They had to put her to sleep to do the MRI.  Later we found out the MRI wasn't going to be until the next morning.  Mom got there about 2:00.  They were on there way to do the EEG.  Perfect timing because Keelie was sleepy and after about 10 minutes of testing she needed to fall asleep.  Now all the chaos breaks loose.  UGH!!!!  During the EEG the neurologists came in.  And boy did they ever come in.  5 DR's came in and they came in with tons and tons of questions.  So Josh sat with Keelie during the EEG and I talked with the Dr.'s.  Dr. McVicar was neurologist in charge.  I was very glad the tech knew what she was doing the glad that Dr. McVicar was in the room because during the EEG the tech got Dr. McVicar and showed her some occipital spikes while Keelie slept.  Dr. McVicar said she had only seen this 2 times in 15 years.  She was calling it Panayiotopoulos Syndrome, which is commonly misdiagnosed as gasteroenteritis and sleep disorders.  Ha ha......gasteroenteritits REALLY????  OK.  We are now getting some much needed answers. The Dr. also noted that Keelie had slow reflexes and she had some hypotonia.  She asked one of her colleaugues to test her reflexes and he was able to get one but it was weak.  She did say she was going to get a geneticist to come talk to us and get a genetic blood work up.  Dr. McVicar left but before she left she said she was going to read up on this a little and would see me tomorrow to discuss more.  And yes,,,,,I cried when she told me my child was having seizures.  That was all the testing for today and it was enough I must say.  Keelie went back to sleep and slept a good while.  Josh's parents showed up as well.  They had Cayden with them.  I was so glad to see her.  I missed her so bad.  When Keelie woke up Josh and I went down to the cafeteria.  My Mom, Cayden and the Gentry's stayed in the room with her.  When Josh and I returned Keelie was eating......YAY Keelie was eating.  Finally.  Keelie was acting like her normal happy little self.  It's so good to see her happy.  Everybody left and we went to sleep.  Or tried to anyway.

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