So much for having good luck. Gavin was just too sick for the original plan so here I am waiting for Gavin to get out of the OR where he is having his line removed. He really gave us all a scare this morning but seemed to be doing a bit better before going downstairs. Now the issue is his access. Originally I had wanted a midline placed in, which is just like a normal IV in his arm only longer and can last longer. Well Gavin no longer has a midline so then the plan changed and they were going to place a femoral line in the OR. That fell through because not only does he have fungus but the OR was not set up for both a removal and placement.
So here we are. Gavin will be coming out of the OR with four or more IV placed throughout his poor little body. We need these lines to hold up. Dr. R. was in touch with Pittsburgh today and will be finishing up the paperwork his evening to send. I was a little taken by surprise on how fast things are moving as we are still not sure if we want the evaluation. We need some serious wisdom and peace. It hard when you have doctors telling you what they think is best but not really seeing things from the parents perspective.
Now the plan is to just hang out here at Hotel duPont and pray for negative cultures, lots of pee and for Gavin's liver and spleen to shrink and give him some relief.