Bo has made so much progress over the last few days and weeks and today we have started to see some regression.
Bo had been showing interest in drinking, eating, and taking his medications on his own so we were able to remove the feeding tube from his nose. His team also decided to take him off the IV nutrition this week as well, which was a huge step forward. Unfortunately, due to a number of factors, Bo is back on the IV nutrition and they replaced the feeding tube as well today.
I’m feeling discouraged today. Home felt so close and now it’s a bit further away. Going home next week is still on the table, however now he could be going home on the IV nutrition as well as needing feeds through his feeding tube via a pump. He may also need to be connected to IV fluids to help keep his electrolytes balanced as well. If I’m honest, going home still being connected to so many things doesn’t feel like the freedom I was hoping for. It’s far easier to manage all of that in the hospital, but navigating it at home feels daunting (not sure how we’ll navigate an IV pole and our stairs at home). I know so many things feel impossible at first but we will figure it out and look back at this as such a small part of a larger journey, but today it feels discouraging.
Overall, Bo is doing well. The big things that they watch in regards to his transplant are all going great. Today for the first time, Bo’s platelets went up on their own. That is a HUGE deal and something we have been praying for since the PICU. Praise God for these victories in the midst of things that feel discouraging.
Will you be praying for us in this final stretch? We want to finish well and feel like our endurance is wearing thin. Monday will be 70 days in the hospital. I kept telling our team that my expectations were low for going home on Monday, but I think I had fooled even myself a bit. I feel more disappointed than I expected by this setback. I am thankful for a few more days for Bo’s team to continue to monitor him closely and for him to become increasingly stable so that he can thrive at home. God is still good and faithful on days like today and by His grace, we’re gonna make it ❤️