Wednesday, May 9, 2012

Drew's Hospital Adventure - 2012 part 1

On Thursday 5.3.12 Drew started having these weird fits of stopping breathing.  We asked around and it sounded like it was "breath holding", which though scary is apparently normal.  He would be fussing and then get stuck in mid scream, turn blue, then purple, have his eyes roll back in his head, and then go limp.  These events terrified me and AJ.  But, since they were normal we decided to wait and see what happened.  We were hoping the couple of times he did it was a fluke.  Well, we went into the weekend and he kept doing it.  So, by Monday he had had eight rounds of this and we called the doctor.  They got us in on Tuesday.

They looked at him and said most everything looked good but there were a few things that still concerned them.  The fact that he is still so small (not even on the growth charts for weight and only at 3% for height, his soft spots have already closed on his head, and he hasn't had any head growth in a month concerned them.  The pediatrician decided that it would be best for us to go to the hospital and get some test done.

At 4pm we checked into Florida Hospital Disney Pavilion.  Nothing happened last night, and all the doctors told us was that we would get and EEG on Wednesday. Since everything was nice and calm we took the night easy. Though, entertaining Drew in a hospital room is a little difficult, the children's floor has some fun toys.

They see me rollin'.
While we were pushing him around in the car we set of the alarm system.  Drew currently has baby low-jack on him.  We didn't realize how sensitive the alarm system was.  I think we need to get that system for Drew at home.  He has become the escape artist.  He has managed to pull off two id bands so far.  His nurse won't put another one on him until we go for a test to keep from losing another one.

Last night we were very thankful to have some great nurses.  We were worried about having to get Drew to sleep in the baby bed (which this time looks more like a bed than a giant dog crate), but they let us sign a waiver saying that he was allowed to co-sleep on the pull-out couch with me.  Whew! That was a lifesaver!!! They also didn't really bother us in the night, but part of that was they needed vitals at midnight and Drew was still up running around.  So, they got them then and let us sleep until about 9:30am.

At 9:30 the neurologist came in to see us.  She said we were getting the EEG, and we might or might not get an MRI.  She said Drew was really advanced for his age, but shockingly small. She also told us that the reflux we have been dealing with might be a sign of seizures if that is what this turns out to be.  AJ and I think that is interesting because we have never gotten the reflux under control for him even on the medications they gave him.

"I fit in here."
After the neurologist left Drew started finding new ways to entertain himself.  He spent a good half hour climbing in and out of the suitcase and pulling everything out for us.  He has also explored under all the furniture and wandered the hallways.

"I got to meet a 'Sam'."
Drew got to meet a therapy puppy aka a 'Sam'. Drew has fallen in love with our friend Joy's basset hound, Sam. This was very exciting to him to see the puppy.  Drew has also spent a lot of time in the Child's Life room. He really likes the big windows.  I think he misses being able to go outside right now.


He has made friends with all the nurses and they think he is adorable.  He is also one of the happiest kids on the floor.  I feel a little awkward that he is wandering the hallways laughing and running while the other kids are so sick.  We did have to tell one nurse that there was a real reason we were here.  She couldn't believe he was the patient.

Looking out over the hospital.
Right now Drew is catching a nap on my lap while we wait until 3pm and the EEG. I will post more when we know something.

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