Another step back.

Last Thursday I posted "the cutest" pictures below and on Friday morning Oakes was re paralyzed.

Just like all of the other unexpected and unwanted set backs that we have had, this is a big bummer!

Last week while Oakes was awake and moving around I could tell he was not 100% himself. I could tell he was uncomfortable. He didn't have much energy. He would play, give us that big gorgeous smile and interact with anyone that would give him a minute, but would pretty quickly become tired. I mentioned this to the Attending, that he wasn't himself and he thought that didn't seem crazy being that Oakes had been in such bad shape the last 2 weeks. Good point, I thought. Then Wednesday night I just had this feeling. This feeling that Oakes was on the verge of a crisis. I had been watching him all day and was trying to listen to what he was saying. I called the CICU at 11pm to just plant a seed in the Fellow's ear, just to unload my concerns and have another person really checking in on Oakes over night while they had a fresh earful of Dr. Momma Ortyl's concerns. Instead of the Fellow, I got the Attending. He listened, gave me his thoughts on what was going on with Oakes, then told me he thought I was tired and should go to sleep. At the time, I agreed with him. Yes, I was freaking tired and I wanted to go to bed, but I also wanted peace of mind about Oakes being in the best health. Less than 36 hours later that same Attending Doctor called me early in the morning to tell me that Oakes had hit a wall all of the sudden, his stats started dropping he was fighting the vent, he was sweaty, working hard, and as we were speaking he was reviewing a chest X ray that had just been taken and Oakes entire right lung had collapsed again. He followed that information with "I am going into his room right now to paralyze him, I will call you back soon, and I could hear him giving the verbal order for the paralytic as he hung up." My stomach turned. There is never really a good reason that someone from the hospital calls, and to hear the stern greeting of an Attending is dreaded. We were so excited that Oakes seemed to be ramping up to his old self, this like every other set back, felt devastating. Not to mention I spent a day or two beating myself up for not going crazy to get someones attention or to get someone to listen to me and help me, help Oakes.

Oakes has been stable over the weekend. They have been flipping him from his belly to his back regularly. He spends 18 hours a day on his belly, then 6 on his back. On Saturday he had a CT scan and his team was able to identify infection in his lung tissue. This was likely caused by everything that happened after the biopsy, but he is now on antibiotics and is responding to them. His numbers have improved a bit, but we are back to the place where the paralytics are slowing all of his organs down and Oakes isn't peeing like we need him to. He is grossly positive, like a liter and a half of extra fluid on board. So, we are praying for pee. If he pees a bunch, then there will be room for his lungs to heal and work properly, and once that happens, his heart will get a break, and then his kidneys. We are in the damn vicious cycle that starts with pee. I am grateful that it is nothing worse, I am happy this is not his airway, this is not rejection or some crazy complication, but I honestly would like to drop kick that vicious cycle out of my life and Oakes'.

So friend, if you are so inclined, please say a prayer for pee, #1, piddle, puddle, wee, piss, potty, make.....whatever you may call it. We just need pee and we need lots of it. If you are feeling tired of praying with words and want to take it to the next level, I think a pee-pee dance will be just as powerful and helpful. Isla and I just did one, no doubt God got the picture!

So our weeks should look like this: Tomorrow - play CDs of the sounds of waterfalls and Oakes pees like crazy. Once the fluids are out, then we can start to wean and tweak his vent, then hopefully by the end of the week we can lift the paralysis and see that cutest smile again. 

I will keep you posted on our progress. 

Hugs for the prayers that I know are coming our way.

XO, Becky

Skoga River Waterfalls, Iceland