I had a feeling this would happen. I guess thats why my excitement for getting a huge team together has dwindled in the last few weeks. Jax surgery has been rescheduled for next Friday the 25th. Our Buddy walk is Saturday the 26th.
I just hope Jax makes it to next Friday.His oxygen need is now up to 1 liter during the day, 2 liters at night. We got our bi-pap, but he is still desating. Its so frustrating, its got to be something with the home setup. He does fine on it in the hospital. Its also frustrating because I think it would help. My concentrator is pediatric so it only goes up to 2 liters, and he actually is barely satting 88 at night on the 2 liters, and ideally we want him above 95 because of his high pulmonary pressures.
His chest x-ray Wednsday looks worse. We can't quite figure out whats wrong. Could the SVC be suddenly causing all this? Is there something else going on with his heart now? His plureul effusion is back and bigger. I'm wondering if when his cardiologist see's that if he's going to want to put a chest tube in and see if its chylus fluid again. This morning my ped is also calling our pulmonologist to see what she thinks of all of this. I'm just worried at how much more he can take before he tanks. Hopefully before this weekend we'll have some news, besides waiting until next Friday. Because like I said, I don't know if he'll make it until then.