2003-06-15

Father's Day Number One

For Father’s Day we had breakfast with Brianna’s dad and then went out to see my dad in Dripping Springs. Hailey was in a great mood and laughed and giggled almost all day. Somehow Hailey made it to the Hallmark store to buy her dad some Father’s Day cards. Her grandmothers gave me a mouse pad with Hailey’s picture on it.

2003-06-14

Teething Pains

Hailey is doing better, we think part of the problem is that she has a cold, she may be experiencing withdrawals from the medication, and she is teething. This is a lot of things at once for a little baby.

2003-06-13

Back at Home

Hailey is home but very irritable. She cried and screamed whenever we tried to sit or lay her down, she wouldn’t sleep unless you were holding her. We were worried so we started calling our doctor in Austin and the other doctors in Houston. We thought she might be having seizures again and that she might need to go back on her medication. This is almost the same behavior we saw when we first had to put Hailey on the medication a couple of months ago. The doctor in Houston didn’t think that this was seizure related so we waited it out. Sanna and Elizabeth came and took Hailey for the night. We had been holding her constantly most of the day so she wouldn’t scream.

We went to look at a private home day care for Hailey. The private home day care offered many benefits including: fewer children, more attention, and less (by about 40%) cost. We decided to keep Hailey in her regular day care because she is more familiar with it.

2003-06-12

We're Out of Here

Brianna thinks we will get to go home today. She thinks the doctors will review her EEG data and send us home without phenobarbital any more.

What do you know? Brianna is right. Dr. Wheless said we could go home and Hailey doesn’t need the medication anymore. Yeah! It only took us about three minutes from the announcement to completely pack Hailey’s things.

The hotel sent an empty shuttle over to the hospital to pick us up and take us back to the hotel. Good thing, as Hailey has a lot of stuff. We filled up the back of the shuttle. While we were waiting a nice lady came over to comment on how pretty Hailey is and to tell Sanna about her remedy for cradle cap. Sanna told her that Hailey didn’t have cradle cap, it was the glue residue from the EEG study.

At the hotel we gave Hailey a bath and packed all of our things so we could get out of here. Hailey laughed and giggled the whole time. She seemed to be glad to be out of the hospital. We pushed everything down the elevator and to the car on bellman’s cart. I think people were amazed that I could pack it so full of stuff. They looked even more amazed that I was able to fit it all into the back of Shannon’s Xterra.

2003-06-11

The Waiting Game

Hailey isn’t eating as well as she did while on the phenobarbital. She is more irritable and gets fussy more often. I think that she is more alert while off the phenobarbital though. She will look around for me when she hears my voice or a startling sound. She seems very sleepy but does not sleep for long periods of time. I think it is do to the noise and trama of being in this place. She only seems peaceful and secure when Mommy is holding her.

I thought for a moment that we might get out of here today. Cathy, Hailey’s nurse, came by to see how much formula we had. We told her we had six more ready to use bottles and she said she would hold off on ordering more because she wasn’t sure that we would be staying longer. Unfortunately, the other nurse came in about an hour later with a box of formula and said we would be here until Friday. We haven’t seen the doctors yet, the nurse thought they might be reviewing the EEG data.

The doctors returned to reveal some of the lab data. The test that return early have all been normal. We don’t know the results of the extended tests but they seem to think that they may be normal too. They will review more of the EEG data this evening or tomorrow and decide if we should return home on phenobarbital or nothing at all.

2003-06-10

Spinal Tap!

Today brought good and bad news. First the good news, the second MRI showed that Hailey’s brain development was normal. We can conclude, I suppose, that Hailey’s seizures are not caused by her immaturity, as originally suspected.

To the bad news, since the MRI shows nothing abnormal, the doctors must search for another cause. They have drawn blood, taken a urine sample, and regretably performed a lumbar tap (a.k.a. spinal tap). The longest 30 minutes so far has been during the spinal tap. They will be looking for a chemical imbalance or genetic cause for the seizures. It will take 3 weeks for the spinal tap results to return.

Hailey has started to show the behavior that she had before she started taking phenobarbital. She has rolled her eyes back into her head, had a few muscle flenches with her hand, and began to cry out in her sleep. Sanna calls the hand muscle flenches “door knocking” because it looks like she is knocking on a door. Hailey does this only while sleeping so far.

2003-06-09

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.

2003-06-08

Hailey in Houston for EEG Monitoring


See the Hailey in Houston for EEG Monitoring set See the Hailey in Houston for EEG Monitoring set.

Hailey in Houston

We arrived in Houston around 7:30 p.m. We are staying at a Holiday Inn that is about 2700 feet from the hospital. I estimated using mapquest. There is a shuttle that runs from the medical complex to both the Crown Plaza Hotel and the Holiday Inn, the shuttles run on the hour and half-hour from 6:00 a.m. until 10:00 p.m.

Admission is schedule for Monday morning at 7:00 a.m. She will have an MRI first thing and will require sedation for the MRI. Hailey can’t eat after 12:00 a.m. and can’t drink anything after 5:30 a.m. This, coupled with Hailey’s present cold and congestion the fever that accompanies it and her teething should make this a fun night.

2003-06-02

Hailey's Second Portraits


See the Hailey's Second Portraits (June 2, 2003) set See the Hailey’s Second Portraits (June 2, 2003) set.