Harvesting Joy

J's past day has been rocky, much akin to the Twins's post-season play. Following the tracheostomy procedure on Tuesday his breathing was undermined by secretions and blood from the surgery, but it wasn't terrible. Last night J had to get bagged again as his oxygen saturation dropped into the 70s, suctioning secretions and junk didn't help much. So his mechanical ventilation support was intensified (higher pressures, higher oxygen concentration, and faster rate). This is of concern because this is the same trend that landed him on ECMO 3 weeks ago. His lungs are delicate little balloons easily tattered by higher pressures, high oxygen, and fast inflating/deflating. His belly has continued to be incredibly distended and taut, which is how the disease first manifested so will likely be the last to resolve. Last night's episode was the result of increased pleural effusions (fluid around both lungs). We can't tell for sure, but we suspect the fluid around the lungs is actually high pressure abdominal fluid blowing by the diaphragm separating the abdomen and thoracic cavity. The bright news is his kidney function has seemed better, but sadly this is due to relaxing the diuretics to keep all the IV fluid he's receiving from accumulating in his little body...which is why his abdomen probably became more distended and caused the increased lung fluid.
We've been walking a fine line between maintaining good kidney function and volume overload while trying to buy more time for his medicines to be really effective. Unfortunately, we haven't really seen any progress on his abdominal fluid production. We've long suspected his spleen is the major traitor, dumping fluid into his sweet should-be-little belly and consuming blood products (platelets, RBCs). We've been debating getting another image study (CT or MRI) to assess if the lesions in his spleen have grown or regressed, but the contrast used is hard on his already assaulted kidneys. If they've grown wildly we'll likely remove his spleen, but we've been hoping, praying to hold off on that - organs are nice to keep. We can't do the MRI until Monday so today we're putting a little tube in his belly to pull some of the fluid out, relieving the pressure and hopefully reducing the fluid build-up around his lungs.
For added insult, his tracheostomy appears to be getting infected.
Jameson may be a prince, but his endurance is unbridled Pheidippides (with a wholly different outcome)! Thank you for your continued prayers for Jameson's strength, resilience, and overall recovery.