Peace at the end of a long day

We waited 7.5 hours today to find out how our baby handled brain surgery. They called to give us an update every hour or so, but that’s still an insane amount of time to wait.  Good news is she is such a fighter, they say it was a “beautiful” surgery and we have survived part one of our plan to heal her. 

While we are happy about what we hear from the doctors and you are welcome to do a little jig with us, the hardest part has yet to come. Not sure what will turn out to be the winner —-  the waiting for the seizures to come or waiting to see how her little body reacts to the second surgery – where we remove part of her brain.

One of the first things they did when she arrived in ICU is attach the leads coming out of her skull to the machine that reads her brain activity. This nearly robotic machine, complete with flatscreen and a minion-shaped camera on top, constantly stands at the ready to capture Reese’s story. (See previous post and web site about this device).

She is now hooked up with a catheter, so add that to the surgery lines and she has 4 tubes coming in/out of her body, PLUS the 34 leads attached to the grids laying on the left side of her brain. 

I have had to remind myself at moments why we are doing all this. That this seemingly torturous activity we are choosing to inflict on the sweetest baby ever is in fact BETTER than the alternative. The alternative being the incessant seizures that start to cluster and get closer and closer together heading toward an unspeakable unknown. The life of never eating once seizures start because she can’t stay awake long enough between them to get any food down. A life that is completely unpredictable and dependent on severe medications. 

We’ve had such an exhausting day and every time we think we are going to rest, some other question or issue comes up that we need to get addressed and they day just flies by. 

Upside is we are getting the VIP treatment and we have our own private nurse. So this very pooped mommy and daddy are closing their eyes for the night. This room is warm and quiet and despite how it looks like the white tent scene from ET in here, I’m very comfortable and very trusting of the staff around us. 

Thank you for your patience, your support and love, and for hanging in there with us. We haven’t taken many pictures. Remember, this is the part that Reese probably prefers we don’t document — they predict a lot of swelling in her face tomorrow so we leave you with this little face for now. 

We will see what tomorrow brings. It’s not going to be pretty, or easy for Reesey, but you are all part of the team who is helping her get past this.  So we thank you very much!

Second night after surgery

And what a day we’ve had! This morning I got up from a pretty good night sleep to a splitting headache. To which I realized I have no room to complain compared to my daughter’s pain. Within 5 minutes of me standing up, I was watching them redress her bandages for the first time and I got a little light headed. I think combining the sudden jump up from sleeping, the headache and the gruesome sight before me, I just couldn’t process it all. Luckily I recovered quickly. I don’t like missing anything that they are doing to her.

We have found the more on top of things we are, the more we update nurses on what we’ve seen, what others have done… we repeat medicine needs, we ask for things…. it’s all helping to make sure she gets the best care. They don’t know her like we do. And as hard as it is to be assertive sometimes when you clearly don’t know the lingo or the details, we’ve just come to not care about people’s feelings. We are nice and respectful, but we tell them what we want for her, and we tell them when they’re wrong.  

But let’s get to the highlights of the day! Davis came for a visit and we enjoyed the therapy dogs’, Chanel and Ralph, second birthday party! Davis won a prize and we made sure to share with other kids. We had lunch and cake, worked on his homework and then played some more. But the biggest part of the day was having Davis see Reese for the first time. So scary for us, but so worth it. He was so pleased to be able to help out by feeding her. 

He is a love and has a huge heart. He apparently somehow senses this time is different. We’ve tried to prepare him for weeks and months that this was coming. We talked about it when the ambulance came Sunday. He is never grave and sad, but he is empathetic somehow. He is also a busy boy and doesn’t stay focused on any one worry long. It’s a great upside to him being his age and not dwelling on Reese’s gory details. I mean heck, he hardly missed us for a week over spring break!

So when he asked grandma Tue night when we were coming home, it was a bit of a shock that he was already thinking about us. And when he arrived at the hospital (grandparents took him out of school early), and he saw our favorite Chlid Life Specialist Kat, he told her everything and said he hadn’t seen his baby sister yet. His love for her is so real. I get more emotional at the two of them than anything. So he came up to the room after we prepped him for how she would look and he was all just fine with it. He asked what was wrong with her eye, and we said it was like a bruise that just swelled up a little. He was fine with that. And in about five minutes he was read to leave. Checked that off his worry list.

And then that wasn’t even the end to the day! Reese decided she felt so good she could sit up in bed. So we adjusted, we padded, and we accommodated her. She is so amazingly strong! I’m amazed. So amazed. I was queasy just watching her lean forward and seeing the leads in the back of her skull tug and move. It gives me the willies to think how it feels. But she doesn’t have the best reaction time to nerve-related responses, so it could be she doesn’t feel it at all, or it could be she doesn’t know how to process what she is feeling.

Either way, she sat up for maybe 30 minutes and played with her toys and was more interested in eating and taking some water. She exhausted herself though and needed to snooze right there sitting up.

They changed her head bandages two more times last night. It’s about a 20 min process each time and we help, because we want to and because we need to feel needed. It also gives me the willies. But each time I see her stitches and the cords coming out through her skin, I am a little less bothered by it.

So we’ve all had a big day and we’re going to get some real sleep I think.  

Look at that amazing hair, even post seizure she is beautiful. Unfortunately the time has come for us to face surgery and put all our planning into place. I will share when we know more but tonight will most likely just be waiting. Wish us luck. #ambulanceride#3 #epilepsywarrior