We received some sad news yesterday from the eye surgeon. Benjamin’s eyes have stopped progressing and he will need additional surgery in order to try to save any vision. For those keeping score at home, we are now up to Plan D. The problem is that his retinas are not unfolding and reattaching as they should. This might be because of scarring that is forming (though he can’t see any) or because of stiffness of his retina. the surgeon wants to operate again and see if he can tell why the retinas are not improving. If there is scarring he can try to remove it, or he may just re-inject gas bubbles to help unfold the retinas. His also said his eyes are much smaller due than they should be at this point due to the disease – making the surgery more difficult.
“So when is this surgery?”, you might ask. Well since they put Ben back on CPAP after his last long run of being off, he hasn’t been very stable staying off for very long and they are trying more regimented on/off schedule. The surgeon wanted to discuss with the primary doctors when is a smart time to do this (the timing isn’t super critical it seems). But then more stuff came up…
Benjamin had an x-ray that showed some disease in his bones that could point to a bone infection. They ran 6 more x-rays and every test they could. The x-rays show that his bones are not smooth and regular on the outside as they should be. His blood work does not show any sign of infection though and we are waiting on cultures to come back in a few days to see if anything grew. Then he ran a fever this morning (it was gone next time they checked though) and that added fuel to the fire so they have already decided to start him on antibiotics again. They also did an abdominal ultrasound and found possible fungal balls in his kidneys again. If he ends up being positive for a fungal infection this could mean an additional 6-12 weeks of being in the NICU.
Amy and I hope they are over-reacting, but it’s better to be cautious. We just hope everything comes out clean, he gets more stable and they can do the surgery so we can get back on track pushing this boulder up the hill.