Day 7 in the PICU: A Glimpse of Progress Amid the Struggles.
Day 7 in the PICU has been another rollercoaster of emotions. Last night, we faced some tough moments. Our sweet girl, who has already been through so much, had a mild fever for a while, and her heart rate spiked unexpectedly. On top of that, she continued to experience severe coughing attacks that led to her throwing up a large amount of old brown blood. It was heartbreaking to witness, and each episode left us feeling a bit more drained. But through it all, she showed her strength, as she always does.
The morning brought a glimmer of hope—something we’ve all been waiting for: her first bowel movement in a week. It may seem like a small thing, but in the context of her recovery, it felt like a huge win. A sign that her body is slowly getting back on track, bit by bit. After such a long wait, it was a reminder that recovery is often a slow and steady process, with moments of frustration but also bursts of progress.
Today, she underwent an esophagram to check on the surgery site, and the results showed that there is still a small leak. This means that the long-anticipated extubation will not happen today as we had hoped. Instead, the medical team has decided to wait another week before they recheck the site for leaks. The reason for this cautious approach is clear: the risk of further damage if the site is not fully healed is too great. When extubation happens, if she requires air—especially high-flow air—after the procedure, the site needs to be completely healed. Otherwise, the force of the air can cause the surgical site to rip open, which is exactly what happened during her last surgery. As much as we want to see her extubated, the team isn’t taking any chances this time.
In addition to all of this, she’ll be getting her bridal replaced today. For those who aren’t familiar, the bridal is a device that rests between her nose and upper lip to help secure the breathing tube. Unfortunately, due to all of the puking and the fact that she’s still barely big enough for it, the bridal has slipped down into her mouth. It’s not the ideal situation, and it’s uncomfortable for her, but it’s just another part of the process that we’ll have to work through.
As I sit here, watching her rest and recover, I can’t help but feel a mix of emotions. On one hand, I’m grateful for the moments of progress, like her first bowel movement in a week and the fact that she’s still fighting. On the other hand, it’s hard not to feel a sense of sadness and frustration as we continue to wait. It’s not easy to see your child go through so much, especially when the road to recovery seems so long and uncertain. But through all the pain and setbacks, we remain hopeful. We have to.
Today, I found myself reflecting on something that makes all of this a little easier to bear—her PICU friends. It seems she wasn’t quite ready to leave them yet. In a way, I get it. Moving rooms, the constant changes, and the uncertainty—it’s exhausting. I hate packing and moving rooms, too. But we’re in this together, and we trust that the medical team is doing everything they can to help her get better, even if that means more waiting, more adjustments, and more care.
Though this journey has been one of the hardest things we’ve ever faced, it’s also been a testament to her strength and the incredible support system around her. We’re grateful for every small victory, like the first bowel movement after a week of nothing, and for every bit of progress, even when it feels like we’re still a long way from the finish line. We know that healing isn’t always linear. There are good days and bad days, but we keep moving forward, one step at a time, holding on to the hope that the worst is behind us.
As we continue on this difficult path, we ask for your continued prayers. For her strength, for the medical team’s wisdom, and for her body to heal so that she can finally take that next step—extubation. We are so thankful for everyone who has supported us through this journey. Your prayers, your kind words, and your love mean the world to us, and they give us the strength to keep going.
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So, here we are. Another day in the PICU, waiting and hoping. And that’s okay. We’re not giving up. We’re still here, still fighting, and still so thankful for each step forward, no matter how small.
Thank you for standing by us. Keep praying, keep hoping, and keep sending your love our way. We are so blessed to have each of you on this journey with us. 💕
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