Day One: MRI, EEG, and Blood Samples

We tried to wake Haley up to eat at 12:00 a.m. Our plan was to stuff
her full of cereal right at 12 so she could sleep until
morning. Hailey had other ideas. She wouldn’t eat anything probably do
to the teething pain. Hailey is very restless, as we all are, she
wakes up about every hour to cry a little before falling back to
sleep.

We drove to the parking garage about 6:50 a.m. in order to check
Hailey in, we have enough Hailey supplies to last until Friday or
Saturday without reinforcements. Hailey is sleeping so check-in is
going smoothly. This hospital is not on the insurance company’s
network so benefits are paid at the reduced ‘out-of-network’
rate. That is really too bad because this hospital seems to really
know what they are doing. Admission and transfer to the MRI department
went smoothly. We were sent to the prep-and-recovery room before we
had all the consent forms filled out. Less waiting is good.

Hailey woke up for the MRI prescreening exam. At first it went well,
she smiled and looked around while they took her blood pressure and
listened to her chest. Things began to turn ugly when it was time to
sedate her.

The last MRI required general anesthesia, in the form of gas. This
time she will be given a liquid called chloral hydrate. She only
needed 400 mg to fall asleep. I had to hold Haley down by the
shoulders while the MRI nurse squirted the foul-tasting liquid into
Haley’s mouth. Hailey screamed, coughed, and acted like she was
choking during the procedure. That part of the parent’s job is no fun
at all.

This hospital allows the parents to go into the MRI exam room during
the procedure. Hailey and I put on earplugs and went into the cold
room for about an hour of loud magnetic resonance imaging. Hailey
didn’t move during the exam. At one point they had to stop the MRI
machine and reattach the oxygen tube that was going into her nose
because it came loose.

After the exam, we returned to the prep-and-recovery room to
recover. Hailey began to wake up immediately so I was allowed to give
her some Pedialyte. She took all of the 4 ounce bottle as quick as she
could swallow. This signaled the end of the need for recovery so we
were sent up to her room in the appropriately named Jones Pavilion. We
had a choice of wheelchair or crib for the trip up to the room. I
thought it would be easier to push a wheelchair than a crib so I opted
for the wheelchair route. An orderly pushed me up to the fourth floor
while I held Hailey. She was very calm and quiet for the short trip.

Almost as soon as she had arrived in her room the EEG technician
arrived to attached the EEG leads. These twenty or so leads will
remain cemented to Hailey’s head until we are done here, hopefully
before Friday. The leads are covered by a wrapping of gauze so Hailey
looks like a ninja or a mummy.

The room has a CCTV in the rear-left corner, it has pan and tilt
capability but is trained on Hailey’s large metal hospital crib. The
crib features side rails and a roof. Fully closed it more resembles a
circus cage than a baby crib.
Some pictures were taken.

The anesthesia has made Hailey very sleepy and will remain in her
system for the day. We need to wake her every one to two hours to give
her some liquids and keep her hydrated. So far she has been sucking
down the bottles as soon as we wake her.

Our doctor’s fellow (Perkins) has been in to exam Hailey and acquire
the family history. He is a real nice Doctor. He says they will exam
the MRI scans today and have the results for us tomorrow. We have been
told to only give Hailey the nights dosage of phenobarbitol. They will
remove her slowly from the medication in order to prevent withdrawal
as it is addictive.

Hailey’s nurse is great, Brianna likes him for the Scottish accent, I
like him because he has gone out of his way to make sure everything is
going just right. Even though we brought formula and supplies to last
until Friday, we found some of our formula in premixed six ounce
bottles that can be used with disposable nipples so we don’t have to
worry about cleaning our bottles. The hospital’s dietician has been by
to make sure Hailey is receiving the proper food from the
cafeteria. They bring her rice cereal and baby food, today it was
mixed vegetables and applesauce. Too bad we can’t this level of
service from a hospital in the network.

My mom is taking the night shift her at the hospital she has just
arrived and now Brianna and I can go home and get some sleep. Also,
they have just received the blood levels for phenobarbitol and have
told us not to give her any more.

Hailey’s doctor came in to introduce himself and we gave him her
previous MRI. They hope that Hailey will have a seizure so they can
capture it on the EEG and the camera. They are also suggesting doing
additional tests while we are here so they can determine or rule out
anything beside seizures.