At Cooks they suggest you be up and dressed and ready by at least 8am for the doctors, nurse staff and any specialist that may need to see you. We had our nurses, Shalyn & Katie, checking on Bug at least once every hour through the night and into the morning. At 7a we met the new nurse for the day, Dale, and at his 8 o'clock check he briefly went over the day with us. Mike was our paramedic again that day and he came in while Dale was with us to get Bug's vitals. Dale let us know that we would see Dr. Perry again that day to go over the EEG from the first day. Bug would also have some blood drawn later in the day for some tests that Dr. Coleman ordered with Dr. Bassinger (metabolic geneticist).
Dale said that most of the day will be just us hanging out. And that's exactly what it was! Bug was feeling more comfortable on her second day there but still wasn't napping for us. Cook Children's was so wonderful and provided everything we needed. Bottles, diapers, wipes, shampoos, highchair and even a gym playmat so Bug could get on the floor and play with her toys!
They also provide a DVD player and a Wii in each room so Michael was occupied with that for a little while which kept him from going too stir crazy!
Dale came in around 11a and brought in lidacaine to apply to Bug's inner-elbows to numb it a little bit for the needle to take blood. This was AWESOME! Rayleigh Bug didn't even feel the prick when the lab lady came in about 30 minutes later to draw the blood!
Our Bug started getting fussy around noon and we could tell she was just so tired it was starting to hurt so we rocked her in the recliner and she dozed off after some time. Then about 20 minutes into the nap she had a seizure.
We pressed the button on her EEG pack and Dale came in and announced her seizure behavior while the EEG techs had the camera on her and microphone listening. The seizure lasted almost 2 minutes. It was very hard to watch. They all are.
After it was over you could see on her face how confused and tired she was :( and there was nothing we could do to help get her back to sleep. She just wasn't having it.
The day continued this way, Rayleigh tired but not wanting to sleep. So we would rock her for a little bit so she could get some rest or a 5-10 minute nap and then we would entertain her by playing or sitting in the highchair to eat.
During all this chaos, Dr. Perry came in for about 2 minutes. He said that based on the previous day's EEG he confirms the episode as seizures. (we already knew that, but moving on) he said that he wants to take a closer look at the EEG to see where the seizure activity is starting and spreading from. And that was about it. He was very busy.
Around 6 o'clock that night Michael ordered some pizza to be delivered to our room. Rayleigh also started drifting off so we thought it would be perfect for her to get some sleep while we get some food!
Didn't work out that way. Unfortunately, the pizza guy knocking on our door to deliver the pizza startled Rayleigh awake and she then had a seizure about 25 seconds after waking up. I press the button, Michael goes out in the hall with the pizza guy to get out of the nurse's way and they do the announcing of activity, check on her for a little while after she comes to and leave the room.
At least after this one she wasn't so shaken up. She hadn't been asleep very long and the seizure, although the same length as the earlier one, wasn't very severe on her muscles. She didn't go back to sleep but she wasn't upset or unsettled so she sat on my lap while I ate some pizza. Although starving from not eating that day, we didn't have much of an appetite from what happened.
After dinner there was a nurse change and we got Shalyn & Katie back. We were very happy to see some familiar faces again and even Bug seemed to enjoy their company. More like friends than doctors to her!
Later in the evening, around 8:30 they brought in her medicine. She's down to half a dose of Phenobarbital the entire trip so they can catch more seizure activity than if she was on the full dose. Nurses have to administer the medicine so I hold Rayleigh in the cradle position like we do at home while Shayln squirts the Phenobarb into her mouth little by little. She eventually takes it all, but not without putting up a good fight!
We can't get her to sleep that night. She seemed most comfortable cuddling with one of us at a time on the couch/bed but we know we aren't allowed to co-sleep on it. When Shalynh one of us at a time on the couch/bed but we know we aren't allowed to co-sleep on it. When Shalyn & Katie came in for the 10 o'clock check on Bug and noticed that she was still awake I asked them if we could get the consent form to sign and get the adult bed in the room instead of the cage-crib so I could sleep with her in the bed.
Shalyn came back and said, "I am so so sorry but the patient has to be at least 1 year old to co-sleep."
This was a pretty big bummer because Michael and I knew that we would all get the best sleep if we could just co-sleep. We snuck in one hour of her and I sleeping on the couch/bed together and then moved her to the cage-crib. She continued to sleep for 2 hours but then woke up with another seizure. Pressed button. Nurses came in and announced activity and stayed with her for a bit after. They left. Rayleigh stayed awake. So did Michael and I. She fell back asleep around 3:30a but woke up about every hour whimpering so we would get up and soothe her back to sleep with singing and her pacifier. It was a hard night, but we made it through!
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