Monday, February 25, 2013


Friday was a big day for us! We got up at 0630 so Brayden could have some breakfast before his NPO time. We left for Children's Mercy at 0800 so we didn't miss our pre anesthesia testing appointment. We had minimal issues getting there, and arrived in plenty of time. Brayden got checked out and cleared for surgery and then we went to the lab for him to give blood. After giving blood we had some time to waste since we got there early, so Brayden got packed in his wagon and we wandered around the hospital. During our aimless wandering we saw some quilts with each square dedicated to a child that had lost his or her fight to an illness. These brought the thoughts to the front of my mind that I have been pushing aside for a while now. I pushed those thoughts aside, took a deep breath and wandered on.....
After arriving in same day surgery, we got Brayden checked in and changed into his gown. I finally got to meet Dr I, the neurosurgeon that would be assisting Dr C with the surgery. He marked Brayden's site, and discussed the procedure with us. We were ready to go, just waiting on Dr C. I love Dr C, but I seriously just want that man to show up to 1 appointment on time :) He finally showed up and after an emotional goodbye I sent Brayden off to the OR.
Its hospital policy that one parent must remain in the waiting room after the surgery begins. While they were getting Brayden positioned and his lines placed, we went to the cafeteria to get some food to take back to the waiting room. We made it back, and I picked at my food for what felt like forever. They finally let us know that they got started, and then the real waiting began. We were told that he would be in the OR for 90 minutes. Those very long 90 minutes came and went, and finally here came the surgeons. They told us that Brayden did wonderfully, and he was in recovery. They also told us that they took three pieces of the tumor and it appeared preliminarily that all three pieces seem to be low grade. Dr C did warn us that the preliminary results are often not completely accurate, and that he should have some final results Thursday or Friday. 45 minutes later we were told we could go see Brayden as he was transferred to ICU.
I had never been so relieved to see my little man. He was very drowsy and I only got to see him for a minute before he was whisked away to the ICU and we were sent to the waiting room while they got him settled. While we waited I signed all of our paperwork for the PICU, and then we were finally allowed to go back.
 Even from a nurses perspective I was surprised at the amount of tubes he had. He had a peripheral IV in both feet, an arterial line in his left wrist, and he even had a Foley catheter (size 5 fr). I knew he would have all of those things, but I guess I thought they would pull them in recovery.
We had a pretty rough night overall. Brayden started really waking up around ten, and he was definitely unhappy. We offered him some clear liquids but he refused. I think he wanted to be held, but it just wasn't feasible at that point. He fussed for an hour, and the nurse and I finally decided he needed some pain medicine. He got a dose of IV fentanyl and that put him to sleep, but it only lasted about an hour and a half. When he woke up he was fussing again so we gave him a bottle, and I finally got to hold him. He drank his milk and got back in his crib. He apparently decided to have separation anxiety during this admission because he melted down every time I tried to step away from his crib. The fussing continued so the nurse gave him an additional dose of Fentanyl. Not long after that dose he was still inconsolable, his heart rate became elevated and he began shivering uncontrollably. I was finally able to calm him and he stopped crying, but the shivering continued and his heart rate was sustaining in the 170's. The nurse was concerned and went to get the doctor. It was ultimately decided that from a neurological perspective Brayden looked good, so the IV Fentanyl was discontinued. The shivering finally stopped and we went to sleep somewhere around 2AM. I heard Brayden gibbering with the nurse around 4, so I went back to sleep. I got up at 7 and went to get a drink. When I came back he was awake, so I gave him a bottle and ordered him some breakfast. We took this picture while we waited for his pancakes...... poor guy.
He ate some breakfast, the nurse took his arterial line out, and I finally managed to get him to sleep.......
Later that morning we were transferred to a telemetry floor unit. He napped a very little on and off throughout the afternoon. We had some visitors (thanks for all our care packages) and the nurse washed his hair. After our night on Friday, the plan was that Bret would stay with Brayden and I would go home. After we had dinner, I was having a really hard time leaving and going home. When he was discharged from the NICU I never would have dreamed that less than 1 year later I would be leaving him in the hospital :(  Nonetheless I managed to leave around 8 and went home. Bret was amazing and text me when the baby went to sleep and when he got up. I made it back to the hospital by eight the next morning, and Bret and I went to the cafeteria for breakfast. When we got back to the unit the care assistant had Brayden out and was carrying him around the unit. I appreciated that a lot. We went back to his room and ordered him some breakfast.
 He looked much more himself and even fed himself breakfast!
Neurosurgery finally rounded, and we were discharged home Sunday afternoon.....
Our overall experience at Children's Mercy was amazing. The nurses were excellent as well as the doctors. I was a little nervous about the weather and how it would affect Braydens care, but it didn't. Apparently the necessary staff all stayed in hotels nearby that the hospital paid for and the shuttle picked them up. Amazing! Thanks to everyone who was involved in Braydens fabulous care!
Oh, and lets not forget granma and granpa got him a coming home cake!
We are hoping for some biopsy results later this week, although I am not sure if that timeline will be affected by the weather. Brayden is continueing to recover pretty well, and is finally started getting his strength back this evening. As I write this blog he is in his crib rolling around. He's not really cranking, but he is definitely not sleeping. Here's to hoping he goes to sleep.......

1 comment:

  1. I go back and look at these pictures and he is such a little trooper. The only thing he knew Friday morning was he got to eat Breakfast, but he never gets to run around in his PJ's except when there is something up. He moved right along with the flow and kept that happy face going. Somethimes I think he knows how hard this is for everyone so he just keeps smiling. He has been through so much, but to see him after surgery was such a heart breaker. Wires every where.
    Granma and Granpa keep praying and we will always be there for you little man. You have brought us so much joy & laughter through all this.