She was starting to feel more comfortable being there and also getting used to the wires from the EEG leads and "no-no" leg brace that covered her IV.
Although still not sleeping well, she was in a much better mood throughout the entire day. We played on the floor on the gym playmat several times and we got a lot of smiles out of her that day!
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| Resting her playmat with Daddy while he calls the grandparents to fill them in. |
Mike, the paramedic, brought in some jarred baby food for Rayleigh to eat. He brought carrots, applesauce, and beef stew. Our Bug hadn't ever tasted anything beef so we thought we'd give that a try first. Oh boy! First, as soon as we opened the tiny jar of beef stew the entire room instantly smelled like wet cat food. It was awful. We thought, "Well, the green beans don't smell good either but they taste alright so maybe this won't be so bad." We got a tiny bit on the spoon and gave it to Bug. Her face squished up and the food came right back out. We scooped it back and gave it another go. Same reaction. So Bug and I talk Michael into trying a small bite himself. He almost gagged! So without hesitation we closed that jar back up and threw it away!
We gave Bug some applesauce and then a little formula and she was soon falling asleep for what we assumed was a long and much needed nap since she was feeling more comfortable. Well, that probably would have been the case had she not woken up with a seizure about 25 minutes into her nap. The seizure was the same as the ones the day and night before and so was the routine. Press button, make room for nurses, Dale (her nurse) announces her seizure activity to EEG techs on camera/microphone and attends to Rayleigh for a little bit after the seizure ends to make sure she's doing ok.
Dr. Hernandez, the leading epileptologist there, came in after things had settled back down. He was so wonderful with his bedside manner and knowledge of infants with epilepsy. He told us that Rayleigh's brain activity remains completely normal when not in the seizure and then it spikes during the seizure, calms back down with mild spikes for her myoclonic jerks coming out of the seizure and then the brain waves return right back to normal. He told us that he would like to do the lumbar puncture to check her spinal fluid because it's the best way to get an accurate reading of the fluids that move through her brain. He saw our unsure faces and told us that he would do the LP himself and that he does them several times a day! This reassured us and we decided to go ahead and have the LP done the next day right after her MRI when she was still under anesthesia.
Dr. Hernandez told us that she is back to having tonic-clonic seizures and that the Keppra she was on during her previous EEG was probably suppressing the clonic phase of the seizure and that is why the EEG read that seizure as tonic seizure without the jerking movements. Dr. Hernandez explained that the seizure activity is starting somewhere deeper in the brain and then spreading to both sides of her front hemispheres. He said that the MRI they do has much smaller slices, referred to it as an HD MRI, and could find something deeper within her brain that the previous MRI missed.
Dr. Hernandez told us he would be back the next morning to discuss more with us before she went downstairs for her MRI and LP.
About 20 minutes later a lady from labs came in to draw blood to run tests for Dr. Bassinger, the metabolic geneticist. She did great and got all she needed with one prick and Rayleigh did fine!
At Cook Children's Hospital they have a parent's lounge that includes a coffee maker, ice & water machine, a refrigerator, a microwave and a small table and chairs. This room was right next to our room so I visited the coffee machine OFTEN to keep the energy up that I wasn't getting from sleep. Cook's also has a giant playroom on the Epilepsy Monitoring Unit (EMU) floor. It has several little tables and chairs, lots of games and toys and paints and books and everything a kid can think of to play with!
Patients can visit this room as often as they want, even when they are hooked up to the EEG leads because the playroom has cameras that the EEG techs can watch the patient on and the room also has plug-ins for the battery pack that the EEG leads are hooked up to. The battery pack is for about 1 hour unplugged. This allows the patient to unplug from the room and walk around the hospital.
With that in mind, they also have red wagons you can borrow to stroll the baby around. We can take her anywhere in the hospital as long as we are plugged back in in an hour!
This was Rayleigh Bug's first wagon stroll and she LOVED it! We ended up taking her in the wagon 4 times during our stay. Her favorite trip was one night we went to the main entrance area of the hospital that has a super tall ceiling with a old town theme and mirrors and lights and lots of colors.
Day 3 was definitely our favorite day in Cook's with Rayleigh! She was less stressed out so, in turn, we were as well!
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