Cade had a pretty good night overall. He would wake up uncomfortable here and there. Mostly he’d drift back off to sleep, but around 4am he was really agitated and saying his head hurts, so he got some morphine to help. He is still throwing up little amounts of mucus, which breaks my heart because I can only imagine the increased pressure when that’s happening and how that must make his head feel. He keeps telling me h head to pee, and I explain that he has the tube in his wiener that is doing the peeing for him right now and that it’s ok, go ahead and pee. He argues with me about this telling me he wants to pee in the urinal (which he really loves doing). He cries “ouch” when he moves his head and I just wish I could take his pain away. And it tugs on my heart strings because it’s in his incredibly precious munchkin voice, which even makes his sad ouch complaints adorable while heartbreaking. One minute he wants me or Chris to lay in his bed, 5 minutes later he’s telling us to get out of his bed or to walk away and stop looking at him. His sass is definitely still strong, but I wouldn’t want to see it any other way. The nurses find these comments funny, he’s just so cute even when being ornery.
He is definitely over all this. He has asked us several times through night and this morning if we can get out of here and says he wants his own bed. The nurses and staff are all impressed by him. His strength, his cuteness, his wit, even his sass. Everyone says he looks and is doing great. Including Dr Ruge who was him this morning around 7. He feels he looks great. Says today is another day of rest and healing.
I didn’t really touch on his head in the last update so I will now. Cade has a large bandage up the back of his head over the incision and a drain coming out of the right side of his head called an EVD. This stands for extraventricular drain, and it allows the fluid from his ventricles to drain and monitors the pressure inside of his head. Right now they have it set so his brain is doing nothing and it is draining by gravity. As the days go on, they will gradually raise the drain causing Cade’s brain and body to start doing more of the work to get it to drain in hopes that once his brain adjusts to the tumor being gone and no longer blocking his draining process down to the spinal cord, that Cade’s body will be able to resume doing this draining on its own and have no further need for the drain. When that happens, we can remove the EVD and that incision will ge stitched back up. The team is fantastic and they prepare for this in such that the stitches were placed during surgery. So once the drain can be pulled they are already in place and just have to be tied up. Less pain for Cade. IF his body can’t do this on his own, he may need a shunt placed and this would be life long. We aren’t going to get in to this now because the team is very hopeful it will not be necessary.
He currently is downstairs having a repeat post-op MRI of the brain. Dr Ruge said we should have results by end of today. In rounds they mentioned the plan after MRI today will be to pull his foley and the art line, which will be great. Less tubes=more room for mommy and daddy to snuggle…when we are beckoned to that is 😉 Based on the results, they will determine if we can decrease the steroids be because they still make him vomit every single time and almost instantly. Despite their efforts to give zofran half our prior to the dosing. If they can’t decrease them, we talked about trying oral version at least to see if he can tolerate that better.
Chris has gone home today to spend time with sweet Rylan and hopefully give him a little feeling of comfort and normalcy in his new and crazy life he has had to quickly adjust to. Cade asks for Ry often, so we plan to let him come visit him tomorrow, which will be great for he both of them. Tracy, one of the hospital chaplains stopped by and walked with me all the way to and from MRI and sat and talked and prayed with me. It was a nice, unexpected visit. Her company is warming and her words when she prays are gentle and beautiful.
Once again I have a couple heart warming signs to share as God continues to show me he is with us. The first is this- last time for MRI we waited almost the entire day with a hangry Cade and the MRI being pushed and pushed, finally getting down there after 4pm. Naturally I was fearing this same ordeal and Cade already being miserable from surgery, I didn’t want my sweet guy miserable all day long again from being NPO on top of it. I was dreaming about, it and in my dream it was late and the nurses were telling me that MRI had called and were trying to bump him to 11am. This morning I woke up and as I was leaving to go to the washroom, his nurse stopped me to tell me she had heard from MRI and they were adding him to the schedule today at 11:15. I said “Stop it!” And I laughed and told her the dream I had just had.
The second one is this- it’s from the day before surgery. When we were in the ER and given the news, we had zero cell service. I had to leave and go outside to call Beth with work and let her know I wouldn’t be there that next day and what was going on, then immediately called my coworker and sister. When I returned Cade had been given an adorable stuffed frog by one of the hospital programs. My aunt, who is also my Godmother, came to visit Cade Sunday. She brought him another adorable frog stuffed animal. I said how cute it was, just like his other frog. She replied asking me if he likes frogs, I explained no he had just been given that from the hospital the night we were admitted. She looked at me and said with a smile “ you know what frog stands for, right?” I replied no. She said “FULLY Rely On God.”
At that moment i knew. God has been with us since the minute we walked through those ER doors. I think even before that as he tried to shine the light on those subtle signs in my head, teaching me how to trust my mother instincts.
Our Warrior Journey 