Sunday, May 4, 2025 was surgery day. My daughter had been in the hospital since Thursday. I went home for the first time Saturday afternoon. My husband told me to take a break and a shower, so I did. I sobbed the entire way home.
I wondered if my daughter would be the same when she woke up. If she would be able to walk and talk. I wondered if each song that came on would be a good song to play at my kid's funeral. I wondered if my 4 year old would remember her big sister if she died during surgery. I was irrational and scared and I had been holding everything in for 3 days. I probably shouldn't have been driving.
When I got home, I took a shower, ate dinner, hugged my 4 year old daughter, and finally felt like I could breathe a little better. I texted friends and told them what was going on. I talked to my mom, who had been babysitting. Then I tried to go to sleep, and my brain kept spiraling and I kept crying.
I woke up early the next morning with puffy eyes. A cold wash cloth did little to help. But, I had to get to the hospital early for surgery.
At the hospital, my husband and my daughter were still asleep. I took off my shoes and crawled into bed with her. When she woke up, we cuddled and whispered. Was she scared? Was there anything she wanted to ask me? We giggled at Dad snoring.
In pre-op, we listened to music. The nurses asked her what she did for fun. She said she had just been in a musical - Willy Wonka - and she was an Oompa Loompa. One of the nurses got excited and said he had been Mike TeeVee in a production one time. She then regaled them with the Oompa Loompa song AND Defying Gravity from Wicked, before the meds kicked in and she was out.
My husband and I went and got bagels and coffee from Panera before settling into the waiting room. A few hours later, the surgeon came in and said the surgery was a success. He had gotten all of the tumor, and she might be able to go home the next day. We were relieved.
In the PICU, my daughter was waking up. She was talking some, but was still a little out of it. The biggest thing I noticed was that she had what the OT later called a "flat affect." She would say "Got it" or provide one word answers to direct questions, but her personality was not there yet. I was prepared for whoever she was going to be post-surgery. I was just happy to have her awake.
I stayed with her in the PICU that night. I had to help her go to the bathroom every 30 minutes. The nurse put a portable toilet next to the bed so she could go without having to be unhooked from all the IVs and monitors she was connected to. I managed to find a time to get myself dinner, which I ate as quickly as I could. I brought a grilled cheese on ciabatta back for her. She didn't eat much of it, but was so happy - ciabatta is her favorite.
That night I had to sleep on the little recliner in the room. It was facing the door, and even though I tried to close the curtain, there was a light shining in my face the entire time. I also did not have a pillow or a blanket, so sleep wasn't really happening. But I wasn't crying anymore. Positives.
My daughter had to sleep at an incline to help the fluid drain from her brain. She wanted me to tuck a stuffed animal between her shoulder and chin with the arms hugging her. All night, my job was to help her up, help her back down, and tuck a dog under her chin.
The next day we met more doctors and therapists. They checked her vitals and her incision. They asked her questions and walked her around the floor to make sure she could handle stairs and bending over. The OT asked if she liked Taylor Swift like so many others her age. She said not really, but then sang "Cruel Summer" to the OT in a mostly monotone voice. It was a small sign of her normal self. We laughed and felt more relief.
Then, they told us we could go home. Just like that. Home, the day after brain surgery. We felt extremely lucky.
A song while waiting for brain surgery
No comments:
Post a Comment