I was awake at 3am this morning in deep thought and prayer. Who can sleep with all of this going on? My mind knows God is in this but my broken heart can't help but question "WHY, Lord, does this keep happening to Rayden?" I'm just being brutally honest here. I doubt anyone would feel any different if they were in our shoes. John 13:7 says "You don't understand what I am doing, but someday you will." I believe this and know He has a plan, but it is so hard to walk through this day in and day out watching Rayden fight through so much pain.
I want to thank everyone for their thoughtfulness, prayers, cards, emails, texts, phone calls, and gifts. Please know that we feel every genuine heart. I know Rayden is so loved. 
They took Rayden to pre-op around 6am. He knew something was wrong. He kept saying, "I'm not going to the OR." Michael tried to keep him occupied by playing a new game on the ipad. I had to ask the doctors to talk out in the hall of the pre-op because he was getting so anxious. I also asked the anesthesiologist to give him something in his IV to calm him down. He's built up a tolerance to versed, so they gave him versed followed by precedex. He was speaking slurred within seconds and didn't mind them rolling him away at 7:30.
Dr. Damitz called at 9:00 saying all went well. She even had Dr. Elton step into the OR to look. She said the 1mm hole had already grown to 3mm so something definitely had to be done. She took a sample to send off for the CSF leak test and another sample to send for culture. She took out all the dark spots where the skin was breaking down and completed major irrigation. She did a horizontal incision this time thinking it will close better. She put in a bigger drain this time as well.
They called me to the PACU about 9:30. He was in so much pain again. There were times where his oxygen levels went down to 80 and I had to hold the oxygen mask close to his face. This made him even more scared. I'm sure he thought I was putting him asleep again. I whispered, "It's momma, and nobody is going to put you back to sleep." He seemed to calm down then. The nurse gave him 5 doses of fentanyl, 5 doses morphine, 2 oxy, and 1 motrin!!!! Nothing seemed to calm the pain more than 10 minutes so she called the doc to get him some Valium. Finally he calmed down so we could move him back to his room. Once he got there he seemed very calm with his pain under control. He even started eating Doritos and drinking Powerade. It wasn't long before Michael noticed Rayden's face was fire red and his body hot to touch. He didn't have a temperature and he's had all these medicine's before so I had no idea what the problem could be. We quickly called the nurse who in turn paged the doctors. With no other symptoms they said to just watch it because it could be a reaction to anesthesia. Luckily, it wore off shortly.
The tooth fairy visited Rayden in the OR this time. She took his wiggly, front, bottom tooth and left him $3! He was excited to see that. Now maybe he will be able to eat without every bite hurting his mouth. The PACU nurses always give him something special each time he goes through as well. Since he's gone through there 3 times in 3 weeks he has received 2 blankets, a Code a pillar, Marble Run, and Rock/Gem Dig. I suppose that's their way of spreading a little cheer and sunshine at such a dark time in kids lives. So precious.
3 comments:
Aunt Debbie and Uncle Timmy are praying for you Rayden we love you so much buddy ❤️
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