We’ve been home for a few days now, and it still feels surreal. He had brain surgery ONE WEEK AGO. Sorry for those of you who (like me) read ALL CAPS as if you’re being shouted at. I can’t help it. BRAIN SURGERY. A WEEK AGO.
Here are a few questions we’ve been asked:
1. How are you all doing?
Good? Awesome? Tired? All of the above.
We geared up for this for so long. I think my husband and I went through post-surgery euphoria, and now I’m sort of tentatively looking around like “Is this it? Is the surgery really behind us? Can we breath a little easier now?”.
2. How is the Monkey doing?
Really really well. You would not know he just had brain surgery. For example: he went to preschool today. He is running and jumping and playing like…well, like nothing ever happened.
The tumor was on the motor strip of his left arm and hand, so he has some weaknesses and loss of use on that side. That has been true since this all started in September, and did not magically correct with the surgery. Now we are doing physical and occupational therapy a few times per week to get him using that arm and hand again fully.
No seizures since last Thursday. As we were walking to the hospital on surgery day he had one, and we sat on a bus stop bench until it passed. That’s the last one I have seen. It would not be particularly alarming to me if he had another one- his brain just went through a lot of trauma and we would even expect some residual seizures. But- none so far.
I’ll take it.
3. Does he understand what happened?
Hmm… On the level that our three year old needs to understand, he understands. But he doesn’t know that a doctor went into his brain and took a tumor out and that there was a hole in his head and now glue is fixing that hole and blah blah blah. I mean- I sort of shrink away from that information and I am 35, so we haven’t gone into that level of detail with him.
A few weeks before the surgery I spoke with our (awesome) pediatrician. He advised us on how to talk about it. Our kids have not been particularly curious for details, so we haven’t elaborated a ton. They heard a lot of things like “We’re going to the hospital because there’s a doctor there who can try to help the wiggly arm get better.” And now: “The cut on your head is from where the doctor fixed your wiggly arm. He had to work on part of your head in order to help that arm stop wiggling so much.”
(The other night, my husband was laying down with Monkey at the end of the day and Monkey confessed that he had cut his own hair once, and he knew that was where the cut on his head came from. I’m not sure what kind of karma-idea that was, but my husband set him straight. It makes me laugh.)
4. Did they shave his head?
No. They shaved about a fingers’ length and width. And he has long hair, so you really can’t even see it most of the time.
5. What happens now? Do you have to cover him in bubble wrap? Should he be wearing a helmet for the next year?
In our discharge papers, we were instructed “no contact sports.” Easy peasy- he doesn’t do those anyway.
I completely, totally cringe/freak out internally when he hits his head on something. But he does not (freak out, that is). We were discharged with some prescription pain meds, but since we’ve been home we’ve only used those once. The rest of the time any pain in his “cut” is managed fine with Tylenol.
We’ll follow up with regular MRI’s. We’ll meet with our neurologist here in a few weeks. He’ll stay on his seizure meds for several more months. These are all things we were told to expect and they feel like a fine exchange for him not having seizures anymore.
In other news, I just gave the kids a bath and realized we are finally (finally) on our last gifted bottle of baby shampoo. When I say gifted, know that these were given to us when Chicken was born. We did receive a ton of baby shampoo and baby wash, but- also- she is five and a half. I’m not saying I barely bathe my kids but…
Katherine of Ye Old College Try: lowering the bar on motherhood, since 2008.