April 7, 2021 "Post-op visit"

These past two weeks at home have been great. Rayden has been handling the wet-to-dry dressing changes 2-3 times a day very well. The worst part for him is taking the tape off. Every single day the open wound section got smaller and smaller. The remaining stitches seem to get deeper and deeper though. I know they need to come out! We did have one scare when we opened his bandage to find some drainage toward the center of the incision. We tried not to panic, took a picture and sent it to his plastic surgeon. She wanted us to come in the next day but after sleeping on it we realized it was just a blister that had formed from the bandage rubbing his incision. His skin is still very tender and fragile there. The blister busted and that's the liquid we were seeing. 

We were actually suppose to have Rayden's plastic surgery post-op visit last week but I began having cluster panic attacks on the way down there. I literally could not control my body. My heart rate was 134 making my entire body feel jittery. My legs were weak and my fingers started tingling and going numb. I tried deep breathing but that was followed by belching. My stomach was so upset. My blood pressure was 177/107. Linda ended up turning around and Michael took ME to the doctor instead. He prescribed me some medication. We rescheduled Rayden's post-op visit and this time Michael took off work to go. I began having these attacks before I even got out of bed but I knew in my brain that if I didn't face my fear this would never get any better. I honestly feel like I have a form of PTSD. I'm embarrassed that I cannot control this. I'm disappointed in myself for not being able to be there for Rayden when he needs me the most and I'm mad that this is happening to me. 

When we arrived at UNC I was flooded with emotion again, but was determined to see this thing through. We made it to his exam room and I sat down. Of course, I had to explain to the nurse that I was fine. I just needed to get this over with. Michael helped the nurse take the bandage off and she rewarded Rayden with cookies. Everything was going fine until the intern came in and mentioned taking out his stitches today. Rayden covered his face with his hands and started screaming. Michael immediately told her NO! When Dr. Damitz arrived she lightened the atmosphere by asking Rayden about Hunter man. She even asked him about his dog, Pootles, and reminded him of how he shot her with his water gun on St. Patrick's Day. When a doctor takes the time to truly remember these little things about their patient you know they are not pretending to be nice, they actually DO REMEMBER you. I know they see so many patients that it is hard to remember each of them clearly and they don't have time to read the charts before every visit. She's not even a pediatric doctor so the fact that she took this time to reminisce and calm him down really speaks highly of her character and means a lot to me. She was very proud of his wound. She said we could stop doing wet-to-dry dressings. She agreed that the bandage was rubbing his back causing blisters so instead of just a dry bandage she wants us to switch to vaseline-to-dry dressings. She took a picture to share with Dr. Elton and mentioned scheduling a time in the next week or two to put him to sleep and take out the stitches. We certainly don't want to put him to sleep again, but with the way the skin has grown over the stitches she would have to dig deep to remove them. That would hurt him so much worse than putting him to sleep. So, of course, we choose the lesser of two evils. As soon as Dr. Damitz left the room I started feeling better. I know it's strange, which is what makes me so upset with my body. I can't control it. I've always been so strong for Rayden and now I can't help myself! I'm so thankful Michael was able to take off work and be there for us both. He took over when I couldn't. We went to visit everyone on 7 Children's where Rayden was inpatient for 65 days. We took them 2 dozen Burney's croissants. Everyone immediately noticed his haircut and said he has grown a foot in two weeks! Rayden had to show them how he could walk down the hall without a walker now that he's out of the hospital. The nurses showed him that they were still wearing his "Team Rayden" bracelets. So precious.