Day 3

Today is going to be a better day we hope. We moved from the PICU to a regular room late last night. That is a huge relief because the PICU rooms were shared and it made sleep difficult. Last night I got to sleep in the bed with Maddie sleeping on me. That is something that just wasn’t possible in the PICU with all her lines and monitors. We both slept MUCH better because of it.

Yesterday was tough for a few reasons. Nausea was really her biggest challenge. She only vomited 3 times but it was after almost every time she ate any food at all. We are working hard to keep her on her medication schedule, and the two seizure meds she takes do not have IV equivalents. So we have given them orally at each dose but then we have to let her stay very still in order to avoid her vomiting and losing her meds.
At the same time, everyone who entered her room yesterday wanted to see if they could get her more active, sitting up, interacting with them……So we had to eventually just ask people to leave her alone in the hours after meds have been given to let her stomach get more settled.
Those of you who’ve spent much time in hospitals know the hierarchy of various physicians. In the PICU, there are LOTS of residents, only a few fellows, and then the attendings are around, but not always there when you need them. After surgery, Maddie had a CT scan which showed that she had a small amount of blood on her brain in the area near her craniotomy site (where they cut into her skull). It also showed a bit of air in the brain. The air can cause nausea and headaches, as can the surgery of course. The blood is concerning because they worry about the potential that the bleeding may not have stopped. To determine that, they follow her progress and look for signs of change in her cognitive/mental status and changes to her vitals. Her vitals were really great yesterday, but because of how much she’s sleeping, certain residents seemed quite alarmed that it was signaling negative changes cognitively. Her surgeon, however, felt that the amount of blood was very minor and that she was acting appropriately for the very major surgery she had just had. I absolutely trust her surgeon, but nonetheless, as a parent, it’s tricky to stay calm when you have doctors around making you feel like they aren’t super comfortable with how your kiddo is doing.
We have seen a few seizures since the surgery, but they are greatly reduced from her pre-surgical levels right now. We know that her seizure activity right now is not necessarily representative of what it will be like once she has fully healed but we are hopeful.
Doctors haven’t rounded on us yet today, but I think our goal will be to have her a little more awake and alert. She has already held her head up a few times today but she still is weak in that department and seems nauseous when she is totally upright. OT and PT will come back by to try to force her to do some work shortly. She did bear weight on her legs this morning trying to get back to me (just on the hospital bed) so we know she can do that and that’s encouraging too.
Thanks for checking in on her today!

 

Update

She is having a pretty tough morning so far with nausea and pain. She has not really “woken up” for us much since last night. Please keep her in your prayers today.Thank you!

Signing off for the night

Just a quick final post for the day…….

She is moving all her arms and legs and is acting like our Maddie. She is very sleepy as expected with all those anesthetics this late in the day. What we have seen so far has been good though. She has taken some of her oral medicines with little bits of juice and gummy bears and hasn’t shown any signs of nausea. Please keep praying for her as we will undoubtedly have a harder day tomorrow when she wakes up and starts to feel pain and anxiety over all the lines and all she has been through.

Surgery has begun

Sorry for the frequent posting but this is the easiest way to get the word out. This first hour was them getting her under anesthesia and all if her lines and breathing tube going. Surgery should take 3-4 hours and then there will be another hour as we wait for her to be transferred to the ICU. 

She is in the OR

I just laid her down as they sedated her with gas. The OR is huge and full of fancy equipment and at least ten doctors and nurses. They said they’ll update us when he starts cutting and every hour after that. 

I’ll update as we get word. Brandon and I are surrounded by our family. We feel and  appreciate all the prayers and love. 

Delayed

Just found out they are running almost two hours behind. So it will be awhile until she is in surgery and I’m wishing I had been more cavalier and fed her later. 

 

Maddie is currently sleeping off one of her big seizures so she is comfortable for the moment. I’ll update y’all when I know more. 

 

Thanks for checking in on us!

The day has arrived

It’s the night before surgery and I never wrote the long post I intended to explain the surgery and how we made the decision.  Sorry! The surgery she is having is a corpus callosotomy. It is considered to be more palliative than curative, meaning we don’t expect it to cure her of epilepsy. If successful, it could reduce or change the seizures in a way that could give her a better quality of life. That is of course, our hope, and it is why we have decided on this course of action.

Her surgery is scheduled for 1:30 pm, which will be a bit of a challenge because it means she’ll be awake a long time in the morning without being allowed to eat. The positive is that we just got back home from a busy weekend at the beach with family. Maddie had a blast on the beach and in the ocean. It was a great way to stay busy so that we can just stop thinking about all the what-ifs.

The surgery will likely last around 5 hours from when they make us leave her to begin sedation. When the surgeon is done, she will go to the ICU for at least the first night and as long as it takes after that to get her stable. We expect to be in the hospital a minimum of 5 days.

We’d love your prayers, most specifically for a successful and complication-free surgery. We feel very confident in her surgeon, Dr Grant, but we know that any surgery, and especially brain surgery, is risky. There are many potential negative side effects of the surgery that can occur over the next few days and we will likely be very busy in the hospital helping control her pain and with therapies to try to help her with any weakness post-surgery. I will be updating here as frequently as I have time. I will definitely let y’all know once they have taken her back to begin the surgery as well as when we get to see her in the ICU.

Thanks in advance for your prayers and for caring about our little girl!

Love to everyone,

Liz, Brandon, and Maddie