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.

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