I’m here typing this update with my head spinning, quite literally. It’s been a long day filled with unexpected developments, and I want to keep you all informed about what’s been happening with Theo.
Last night, Theo developed a very runny nose, and unfortunately, it hasn’t stopped all day. During rounds, the medical team decided to move him to a private room because some results from the viral panel we had ordered were still pending. One of those results was for Rhinovirus, which I initially thought had come back negative. However, due to Theo’s nasal symptoms and the pending test results, the team opted to be cautious, suspecting it might be Rhino.
So, we moved into a new private room—relocating all the equipment and belongings just two days after settling into a new bed space. We got everything set up, everyone in full PPE, and settled in. Then, the results came back. No Rhino. All precautions were lifted, and the assumption was ruled out. However, I found it frustrating when I asked if we could return to our previous bed space around shift change, only to be told no. The reasoning? Theo was still showing symptoms. But if he’s exhibiting symptoms and we can’t return to our old room because of them, why were the precautions lifted so quickly? Why risk spreading anything to another baby if there’s still uncertainty? It didn’t make much sense, but I’m choosing to let that go for now, as there’s something much more significant at stake.
Earlier today, Theo received a blood transfusion due to low hematocrit levels. Honestly, I expected this. The good news is that his levels should improve after the transfusion. However, while sitting in his room afterward, I couldn’t help but wonder what could be causing his watery nasal secretions if he’s not sick. I started considering different possibilities. Could it be related to lymphatics, perhaps edema leaking? But that didn’t seem to make sense since the lymphatic system is internal, not external like the sinuses. Then it struck me: What if it’s cerebral spinal fluid (CSF)?
CSF is the fluid that cushions and surrounds the brain and spinal cord. It’s a serious possibility, but I wasn’t entirely sure. I immediately asked Theo’s primary doctor if she thought it could be CSF, but given the color of the secretions, we weren’t fully convinced. So, we started weighing the rags collecting the fluid from Theo’s nose. For those who may not know, when CSF leaks, it creates a distinct “halo” effect on the cloth, visible when the fluid is under light. When I checked the rag under the light, I instantly knew: “This is CSF.”
I informed the nurse right away, and the nurse practitioner contacted the doctor on call. Now, we have neurology involved, and the plan is to send a sample of the fluid to be tested for a protein called Beta-2 Transferrin, which is found exclusively in CSF. It will take two days to get the results back. In the meantime, if the leakage worsens over the weekend, an MRI might be necessary to better understand what’s happening.
As you can imagine, I’m exhausted after today. I feel like there’s so much more to say, but my brain is fried from all the changes and uncertainty we’ve faced. The most pressing issue right now is determining what exactly is leaking from Theo’s nose and ensuring that it’s not CSF. So, I kindly ask for your continued prayers. We’re hoping and praying that it’s not CSF and that Theo doesn’t face another complication on top of everything else.
Thank you for walking with us through this journey. Your prayers and support mean the world to us as we navigate this latest challenge. Please keep Theo in your thoughts, and let’s pray that whatever is leaking from his nose is nothing too serious and can be resolved quickly.
