super week.

day 133.

Zach and I have a running joke. The minute you say ‘we’re almost done’, you’ve officially jinxed yourself. It doesn’t matter what you’re doing – ‘we’re almost done’ is a nice way of buying yourself more time, more stress, more work.

Last week, Jackson was moved from the CVICU to the Progressive Care Unit. This was a real step in the right direction – it meant he needed less attention, less acute care, and could generally start growing, learning, and, simply, being a baby. We were over the moon. I told my family and friends, ‘we are one step closer to home. We’re almost done.’

It didn’t last long. Six days, to be exact. That’s how long we made it in the PCU. On Tuesday, Zach and I left the hospital for a butchery demo at a local restaurant we love. We had been planning this for months, the product of the only unique Christmas present I could think of for Zach. We made it through arrival and half a glass of wine before we got the call. Jackson had acutely desaturated in his room while we were out, dropping his oxygen levels into the 40s for seemingly no reason.

While they were able to bring his breathing back, the episode was outside of the realm of progressive care. Jackson needed to be in an intensive care setting, yet again, where he could be consistently monitored under the watchful eye of a single, dedicated nurse. So, off to the PICU we went, begrudgingly, and there we have been for the past few days. It has been an up and down, both from a medical and mental standpoint, but we are in a better place now. Jackson is more stable and we are beginning to accept our new home, away from what we knew in the CVICU and what we were learning to know in the PCU.

It has been a struggle. I fought hard to have us taken back to the CVICU but was out numbered. The team here in the PICU is trained to deal with our current issues – possible infection, tracheostomy issues, and the like – but they are unknown to me and he is unknown to them. It has been a challenge trying to get them up to speed and feeling like we are doing enough to advocate for our son.

This week is also Super Bowl week here in Houston, so we have been spending more time at the hospital in an attempt to beat the traffic and be close by for any big changes.  That means a lot of sleeping in chairs and late nights, but also means that we get to spend even more time with our little man. He seems to be making moves in the right direction, but I can’t say how long we’ll be here. Not only because I truly don’t know, but because I don’t want to say we’re almost done in the PICU. That would jinx it.

Jackson’s first night in the PICU. Back on our wires and pumps, and back to full sedation.

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