The last night

I hope I’m not jinxing our discharge by writing this… I’m just so excited! We get to go home TOMORROW! Terran will have been in the hospital for 6 WEEKS. He’s never known fresh air, Moxie dog, our home… really anything outside of a hospital setting. I brought in sunflowers the other day and was instantly reminded of how sterile his world has been. The flowers stood out in stark contrast to the pure medical functionality of the room. Terran has so many beautiful things to explore beyond these walls!

The top best changes that’ll happen when we’re home: [1] sleep next to each other (won’t have to physically get out of bed to sooth him), [2] free reign to go outdoors (we’re going to take SO MANY walks), [3] no vitals checks (aka annoyance-to-distress every 8 hours), [4] we’ll all be together. It’s hard enough living in a hospital room, it’s worse that Walker has poured so much energy into finishing the house work that he isn’t able to be here every single night. For the first few days while Walker is still off work, we’re equally excited to share Terran Time. I’ve been craving movement, anything other than sitting in a recliner-rocking chair, while Walker has been craving more cuddles. It’s a win-win.

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We completed our home care training and I did my first dressing change! We’re actually very comfortable with taking on Terran’s central line care now. No additional training sessions needed. The process became a lot less frightening once we knew everything it entails. There are 3 main processes: TPN change (daily), dressing change (weekly), and cap change (weekly). The TPN change has the most steps but we do it the most often so we’ll get speedy very quickly. The weekly tasks are a bit more sterile (require sterile gloves with the dressing & masks with both) but they’re simpler – the most challenging part is keeping Terran still and calm during the whole process (dressing changes are at least a 2 person process!).

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After the training sessions, I recognized a lot more of Terran’s in-hospital setup and was actually able to help out in some cases! The nursing staff is amazing at Children’s and they encourage my eagerness to help and learn. A common TPN line issue is an “occlusion” alarm. That means the machine is having to use more pressure to send the medicine through at the right rate. Sometimes it’s as simple as a kink in the line, or as complex as a leaking line. We’ve had both + other issues over the past few days which has been great because I’ve been able to watch or help out triaging issues that we will have at home.

Terran has been throwing up a bit more frequently (not great) but it’s more yellow in color than green (good). He’s handling it well, so no concern from the LIFT team – he’s still on track to go home. It’s possible his guts just need a lot of time to heal and even the 1 ml feeds are leading to some backup. I’m considering tie-dying all his swaddles green/yellow so you can’t see the bile stains 😅 we’re definitely going to need to stock up on burp clothes and baby blankets to have everywhere.

It’s been great to have such a skilled community around Terran for the first several weeks of his life, but learning how to live together at home is all I want to do right now.

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