Back at the Hospital

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We’re back at the hospital. E. started throwing up in a major, kind of unbelievable way on Sunday evening, right around bedtime. Everything scary seems to happen around bedtime.

She just couldn’t stop. She was choking on it and retching, over and over. And at the end of two hours of this kind of vomiting, she started puking up actual bile. Which I hope I never see again.

We went by ambulance to the ER and thankfully, my dear neighbor/mentor/friend was willing to stay back with A. while he slept. After a whole lot of tests (X-Ray, CT scan, ultrasound, blood work), we waited around until almost four AM to be admitted to a room. By that point Cedar had long gone home and there I was, pulling an all nighter with E., who was intermittently napping on my chest and wailing. I rocked her in a creaky hospital chair until it was nearly time for coffee.

We do not know why this is happening. Maybe it’s reflux or maybe it’s a dairy allergy or maybe it’s her stomach’s motility. Maybe it’s because she tugged on her G-tube during a recent diaper change or maybe it’s for some unknown, undiagnosed reason.

The docs were concerned that all of this was connected to her brain fluid levels, so they looked at that via MRI. They found no sudden increase there, nothing has changed.

Now we’ve been here at hospital three nights. We are hoping that she will continue to move towards tolerating a reasonable amount of food. In order to help her stomach, we are trying a low dose antibiotic that works to speed motility (how fast she can digest food), so we will see. In the meantime I’ve got a pit in my own stomach watching her struggle like this, in a way that I could never really describe.

The best case scenario is that this medication works and so she stays onto a continuous drip feed, 24/7, which means that she will be connected to a tube full time until she recovers. And that timeline is unknown.

The other option is that she has another surgery. We will find out more tomorrow, based on how she tolerates the drip feed.

I never wanted my child to have to live attached to a tube. I’m more than sad about how much she’s had to go through, going in and out of the ER, all of the medical intervention, with no end in sight.

My kindhearted friend Jenny shared this quote with me, and it’s from the late, super great Fred Rodgers. She was referring to the state of the world, and there’s so very much to say about that, especially right now. But today, I’m focused on getting my girl back to health.

When I was a boy and I would see scary things in the news, my mother would say to me, ‘Look for the helpers. You will always find people who are helping.’ To this day, especially in times of ‘disaster,’ I remember my mother’s words and I am always comforted by realizing that there are still so many helpers–so many caring people in this world.

We do feel a lot of love and support and we are doing our best to share that with E. In this moment, it provides some relief.

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