Oh What A Night!

--> What a night! There were moments of sheer preciousness that we've never seen and also cries of pain. We'll get the bad part over first. Oliver was in enormous pain every hour or so from where the cathater was placed. Everytime he had to urinate he just cried and writhed in pain. This will eventually pass, but of course we hate to see him like that. Now for the good part. All night Oliver was signing songs to us. Andrew or I were in the bed with him and he would serenade us....it was beyond words precious. His voice was still a bit rough, but it did not stop him!

Dream Team Update from last night:

Dr. Duhaime came in after surgery to let us know that she successfully got the entire device out of his body! This is a huge answer to prayer, as the removal of the coil on the Vagus Nerve is somewhat risky and very difficult. She told us before the operation that she couldn't promise she could get it off, and yet she did! She explained that it was like four strings of meat hanging down and the coil was embedded within that. The coils are put in three different places along the nerve, and to get them all off is very difficult because it is very hard to see (plus there is scar tissue at the three week mark). She called us from the Opearing Room and said she got it all out, but wanted to make sure Oliver's vocal chords were ok. We held our breath for a bit, but then he started belting out his ABCs..the most beautiful rendition of that song we have ever heard (albeit a bit raspy)!

Dr. Thiele came by yesterday as well and was wonderful as always. We probably spent 30-45 minutes with her getting caught up and discussing next steps, since we lost the VNS option. Right now the plan is to hold on meds, get home and get settled, and then likely add Vimpat. She is pleased with Oliver's development overall (he was asleep when she saw him). She was incredibly frustrated with the care we got at UNC and at New Hanover. She said she was up all night worried about us as we were travelling here. The woman is so special.

After Dr. Duhaime and Dr. Thiele, Dr.Pasternack (Unit Chief of Pediatric Infectious Disesae) came by. He said they had already identified bacteria on the device and our nurse said it is Gram positive cocci in pairs (for all you medical people.) It will get named something more specific once is grows more on the petri dish. Clearly this thing had to come out. All three doctors felt that leaving it in there would only make things worse.

In other surprise news, we got to see two of our favorite nurses from Oliver's brain surgery time; Rachel and Rebecca. We made this video of Rebecca and Oliver way back then...

Lastly, a friend I have made through Carolyn named Laurie came to visit with her family last night. She has had her own medical fight with breast cancer and is now 2 years in remission. She has two young daughters and is also an NC native. She and her husband came by with an amazing dinner for us, hugs and prayers. What a gift! They also gave us the keys to their home, which is very close to Mass General (Beacon Hill if you know the area) that could be a good option for a quick shower. All we can do is thank God for how rich we are in friends. We don't deserve it!

So at this point we are managing Oliver's pain, and waiting for the directives from the Infectious Disease doctor as to when we can leave the hospital. Our plane tickets are for tomorrow morning, so clearly we are going to need to reschedule.

Thank you for the happiest flood of prayers and well wishes. We are incredibly humbled that all these details worked out so providentially. If we had waited one day later and Dr. Duhaime and Dr. Thiele would be out of town. So many little gifts in the midst of this hard place...