I always feel so behind, but I want to record this all here for journaling purposes! My mind feels foggy right now but here goes. We met with the surgical team to discuss the tumor removal. We finally got to see the images from the different scans he has had, and they were super interesting. On his left side you could clearly see his kidney and his adrenal gland above it. On the right there was just the kidney and then another large spot above it, no visible adrenal gland at all. The doctor said it was about the size of a large grape, but that it looked like it would be easy enough to remove. He did need us to do a 24 hour urine collection on Conor beforehand to rule out a certain kind of tumor. He said that while chances were super low that it was that kind of tumor (like 1% ish) they would need to approach the surgery differently if it was, so it was good to know. They sent us home with lots of little urine collection bags and what looked like a milk jug to put it all in for the next 24 hours. Well. Collecting urine from a 10 month old for an entire day and night is about as easy and delightful as you can imagine it to be. Especially since the next day I had to take him back to Baltimore for a sweat test. GI wanted to rule out Cystic Fibrosis as a reason for his lack of weight gain and the sweat test was the way to do that. I got to sit with Conor in a tiny room, right next to a super hot space heater, for over an hour trying to collect enough sweat to sample from him. The technician tried three different spots but was unable to get enough to even run the test. Too bad she didn't need to test me, I definitely had plenty. Extra annoying that we had to do it because the whole trip was a huge fiasco. Because I had to haul his big jug of pee with me I had switched my usual diaper bag out for a backpack. In the switch I had forgotten to transfer my wallet and the wipes. So, of course, thanks to the baggie attached to him to collect his pee, he had a giant blowout as soon as we arrived at the Children's Center. And since I had no wipes with me I got to give him a quick bath in the bathroom sink. Miraculously, I did have another outfit for him! Then I had to call Marc to come bring me my wallet so I could pay for parking.
And after all that, the lab refused to test his urine because they said it wasn't in an approved container. Even though it was in the container that the nurse told us to put it in! To say we were aggravated about that would be an understatement.
Anyway, surgery was set for the 8th. Poor lad had to come in fasting again, which he was understandably grumpy about. The surgical team said they thought it would be more risky for him to delay the surgery in order to do another 24 hour urine test. They said they called in several more radiologists to examine his scans and felt confident that it was not the kind of tumor the urine test would have alerted them to.
Had to get my boy a special surgery outfit.
We took approximately 5 million pictures and videos of him while we were waiting for surgery to take him back. Just in case.
The tiny little hospital gown was so cute and sad on him. Luckily they had a super fun play room to distract him from his hungry tummy.
He fell asleep right before they came to take him back for anesthesia.
Then we sat and waited for a few hours. We got to sit in the exact same chairs we'd been in exactly eleven months before while we waited for his heart surgery to be completed. Dr. Hackam finally came out and gave us the great news that surgery had gone perfectly and that they had gotten absolutely all of it. One of the main risks for this surgery was blood loss and the doctor reported that he only lost about a teaspoon of blood. So wonderful to hear! Before long they took us back to the PICU to see our boy. He had already woken briefly and gone back to sleep by the time they let us back to see him.
Sweet boy, I hate seeing pain on his face :(
