A couple of weeks ago, Katie got pneumonia again. The first time she had pneumonia, I was warned that her lungs were likely not ever going to be as strong as they were before, that every time it would be worse. But I expected her to stay healthy for more than two weeks.
I had started the conversation with palliative care on her prior hospitalization. Not because I didn’t expect her to get better, but because I have been in a frame of mind for quite some time that centers on Katie’s quality of life, rather than the quantity. Palliative care does not mean refusing treatment that would save her life. It really just means focusing on comfort care over aggressive treatments that could be traumatizing and leave her with a reduced quality of life from what she started with.
Somewhere over the last few months, Katie lost the ability to control her swallow, to protect her airway. So, she got pneumonia because food, or saliva, or who knows what got into her lungs. And she went to the hospital. And she was intubated for – 4? – I think it was four days. And she got better, and worse, and better, and worse. And better, but then had other interesting problems because now she can’t eat. So now we get to try to figure out what and how much formula to give her by g-tube. We were only giving her water and a little formula before. So, even though she’s had a g-tube for over ten years, I’m a newbie with this.
When she got sick again so quickly, I made sure to include palliative care right away. After a lot of discussion, I decided not to let her be intubated. I decided to take her home, because I would rather she be in a peaceful and familiar place, a comfy bed, and not in the place she so vocally hated.
The palliative care doctor came along. Yeah, wow – house calls? Well, with pediatric palliative care, where we live – yes. House calls. He was available to give her meds if she started getting distressed. He didn’t think she’d make it through the night.
She did, though. She kept breathing. Family came to tell her good bye. And the next night, she was still breathing. And the next. And then, she actually seemed to be getting a little better.
A week went by, and it was clear that she had decided to beat the pneumonia. All on her own. No intubation, no arterial lines, no oxygen (she HATED the oxygen mask last time – if she could voice words, I’m certain they would have been inappropriate for a children’s hospital.)
She isn’t back to her old self, and I honestly don’t know if she ever will be. But she’s breathing. She’s showing some interest in the things that interested her before, although she doesn’t express quite as much. I don’t know if we get a day, a week, a year before we go through this again. What I do know:
_ The grandparents are a hell of a lot stronger than I have given them credit for. I was afraid one of them was going to keel over from the stress, but I think I was the closest to having that happen.
– While my husband mostly lets me drive the ship, he will step up when I can’t find my voice
_ When people don’t know what else to do, they offer food and prayer.
_ I will never, ever in my life stop hearing the sound of my own voice answering the DNR questions in the ICU
_ My soul-sister special mommies contemplating hopping a plane to come support me… My bff responding to my asking her to come at the end of the work day with ‘I’ll be there in five minutes’… my other bff popping up with hot cider and a fanciful story I made up about Kate years ago and had totally forgotten… another bff popping up with food and showing her mommy heart, lavishing some needed fun and attention on my other beautiful little ‘un, my other bff showing up with a care package that included foods I loved when I was a ten year old…
_ I have an amazing tribe. I am so blessed.