Monday (8/22) -
Up at 6 a.m., got Emma ready for her first day of K4, dropper her off at school, dropped off Aunt Fran and August at home (a big smile and wave to Momma) and we headed to the hospital. We arrived around 8:45, parked, and went to the Business Office to get checked in. By 9:20 we were in our room on the Children's Wing. Normally when a child is admitted for this type of EEG, they are admitted to the EEG Monitoring Unit but they didn't have enough room for us so we were placed here. There was a bit of confusion as to what we were doing there and details but once that all got sorted out, they came in at 10:20 and started getting a history and documenting her medications. Around 11:30 they began putting the EEG plugs on her head. The have a great Life Specialist who came in and explained to Maddy what was happening. Maddy was a trooper! She played Angry Birds on the ipad the whole time they measured her head, marked it and placed the sensors. She never fought and never complained.
There was a little confusion as to if she was going to come off her meds or not but since her Neuro Doctor was on-call, she came by and told us we were going to decrease 2 of the 3 meds because a rash is often a side effect of removing and re-starting the 3rd med. For most of the afternoon, the morning meds were still in her system so all went as normal. Her EEG cords were wrapped in a black band and attached to a book bag that carried the receiver. I kept telling her she looked like Rapunzel with a long black braid...she didn't buy it :-) She has to take the bookbag with her every time she goes to the bathroom. The data is sent to a computer that sits in the room and there is video and audio monitoring. In the event of a seizure, we are supposed to push this little black button to mark that a seizure happened and then document it. They encouraged us to document any gran mals, small zone out episodes and any side effects (the events that make her wobbly walking that she calls "making her eyes go up").
They came in and put a pad on her hand to numb her hand so they could put a patch there in the event that they need to run an IV or insert meds into her quickly if many seizures begin to occur. The Life Specialist brought Maddy this doll with a patch on her hand just like Maddy. They also gave her doctor supplies to practice on her doll. This was the only time she cried. We didn't talk about the IV because I didn't know if she'd feel it but she was pretty upset that she got a "shot".
We had a few visitors who brought snacks, goodies for her to play with and great community since she can't move from her room. She really loves her teddy bear that talks to her. She enjoys using the syringe they brought to give shots, take blood, and to give medicine. I love the way she will give a toy a shot and say, "Shhh! It's ok! We're all done, alllllll done."
We enjoyed our meals and movies and got ready for bed before one more visitor came. It was so cool to see the EEG waves on the screen - when Maddy was laying down and calm they were pretty small but then when Miss Jennifer came and giggled with her, the waves went crazy. We settled in and found out that my nephew was born in Raleigh, NC ---yay, Asher!!!!
The nurse came in every 3 hours to check on her and she got a little wrapped up between the wires on her head and the wire running to her finger to monitor her heart, but we had an uneventful night.
Tuesday (8/23) -
Maddy slept till 7:30 and we got up and had breakfast. They sent her meds and we played doctor, she played on the ipad and watched a bit of TV. Brother came to visit around 9:30 to share some Ipad time and watch some helicopters come and go (our rooms overlooks the helicopter pad where the helicopters come and go). August went from family all around at our vacation last week to this week where sisters, mommy and daddy are all gone so it's been a big transition for him.
She still didn't have any seizures during the day so we spent the day painting pictures for our nurses, coloring, doing homework, reading books, watching TV, me crocheting and playing the Ipad. I headed home around 5:30 so I could see our other kiddos for a bit and Nathan is now at the hospital. They decided to give her the only meds she's taking a little late and to make her sleep deprived to see if we can get seizures to come. So Daddy gets the joy of keeping her up till 12 and getting her up at 5 :-( They also rewrapped her head to make sure everything stays secure (she's had to get 2 pieces replaced from moment causing them to fall off).
I will return tomorrow morning after dropping off Emma and take up the next day time shift. It feels so bizarre to pray for no seizures for so long and to now be asking for them so that we can find the problem spot. Also pray for our strength as we have to watch the ups and downs.
Let me close with a few updates on how we are being cared for:
We have had many generous people bring us gifts and goodies and provide meals for us this week. My aunt has been a life saver with taking care of August, picking up Emma from the bus stop and packing her lunches for school. I was even able to install the fire detectors for our foster inspection that we needed to do by next week! We have felt SO loved and cared for and it has overwhelmed my heart. Every time someone asks how she's doing or for an update, I am amazed at how many love our little girl. Her facebook page has gone from 66 likes on day 1 to 182 likes at this moment. Your encouraging words and promises to pray have helped us keep pressing on. I told her a few weeks ago that we'd have to go to the hospital for some tests so we could make her "eyes stop going up". Since she's stopped one of the earlier meds, she hasn't had any of those side effects. She told me today, "Mommy, you said that the doctor was going to look at my brain and make my eyes stop going up and you were right!" It's been such a blessing to see her make so many smile and to have repeated opportunities to share her story. Thanks for all you are doing as you walk this journey with us. Life is better together!!!
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