October 23rd, 11pm – It’s been a day full of updates, and I wanted to share everything that’s been happening. Please bear with me as this will be a long post, but I believe it’s important to keep everyone informed.
First, some changes have been made to protect Theo’s privacy. After dealing with several spam accounts posting incorrect information and images about Theo without our consent, we’ve decided to add “watermarks” to our images moving forward. It’s a step we feel necessary to safeguard Theo and ensure that only accurate and respectful information is shared.
Now, onto the health update. After the recent increase in Theo’s clamp downs, the medical team decided to take a proactive approach. They called for a meeting with a few BPD doctors, and it was decided to do a full sepsis workup to rule out any potential infections or viruses. This includes urine analysis and culture, blood cultures, a complete blood count (CBC), viral panels, and more. As part of the workup, Theo has been given antibiotics for the next 48 hours while they await the results.
So far, the viral panel has returned completely negative, which is good news. The tests ruled out RSV, flu, COVID, rhino, and other common viruses. However, Theo’s hematocrit is trending downwards (currently at 30.7), which suggests anemia. When a child is anemic, it means their body is not getting enough oxygen. This is concerning because Theo’s oxygen needs have increased to 35% today, and he’s been saturating in the low 90s, which is not his normal baseline. This could point to the fact that Theo is on the edge of needing another blood transfusion.
Theo’s white blood cell count on the CBC is in the normal-high range, but it’s important to note that he’s been on hydrocortisone (a steroid) which can cause the WBC to increase. His urine analysis showed some blood and elevated WBC, but it didn’t indicate a full-blown UTI. These findings are similar to his urine analysis results from August. The doctor suspects that it could be signs of a UTI, but not an active one. This leads me to believe that we may need to check Theo for urine reflux. Unfortunately, Theo has never been stable enough for this procedure, but it’s definitely something we need to explore further.
As we wait for all the test results to come back, we’re preparing to start Theo on Prednisone steroids — a five-day course. Theo has had this steroid before to help him recover from a case of pneumonia. This time, we’re using it to decrease any inflammation in his lungs. The doctors believe that his recent trach surgery could have triggered an inflammatory response, even though he was on a stress dose of hydrocortisone. If the Prednisone helps and reduces the inflammation, we’re hopeful it will bring Theo some relief. However, if it doesn’t work, the next step would likely be to sedate and paralyze him again for an extended period, possibly weeks. Please keep Theo in your prayers, as we are hoping the Prednisone will work, and we can avoid a return to a medically induced coma.
Here’s a bit of positive news: Since this afternoon, Theo hasn’t had any clamp downs. He also had a good night shift last night, which is encouraging. Interestingly, his day primary care doctor believes that Theo might do better in a quieter and darker environment, which could explain why he has been calmer at night. I spent some time with him tonight, watching him on the ventilator, and I’m happy to report that he’s already showing signs of improvement. The surprising part is that we haven’t even started the steroids yet.
I spent almost 45 minutes massaging Theo tonight, and we sang Disney songs together, which he absolutely loved. His oxygen was turned up to 100% to prevent any clamp downs, but even with that, he still enjoyed the bonding time with me. There’s something about those quiet moments that seem to bring Theo some peace and comfort.
Thank you, as always, for your continued prayers. I truly believe they’re working, and I’m so grateful for all the support we’re receiving. Please keep praying for Theo as we navigate the next steps in his care. With every update, I’m reminded of how strong he is, and how powerful love and faith can be in the healing process.
We’ll keep you posted as we learn more. Please continue to hold Theo in your hearts.
