Rayden's Reason : December 2018

Rayden has actually been very good about NOT standing up and putting any pressure on his feet. He has always been told that he could not walk without his shoes on so this is actually the same concept for him. He doesn't even try to stand up or get off the couch. He asks for help and crawls around from time to time. I am very pleased with how well he is following directions and I pray that he is healing properly.

Since Rayden's feet and legs were swelling so badly after surgery Dr. Vergun had to bivalve the casts, which means simply cutting down both sides and pulling them apart a little to give the legs and feet room to swell. Now that a week has passed and the swelling has gone down she wants to push the casts back together and rewrap them. They did not REMOVE the casts so this is still casting #22.

We discussed the fact that Michael and I requested an MRI before she performs the hip surgery on January 8. Dr. Vergun was NOT the first surgeon to come out of surgery on him saying "that's not what I expected." We want to be more prepared from now on. Dr. Vergun understood our concerns and said they were completely valid but also explained that this was risky and unnecessary. To do an MRI of the hips he would have to be put to sleep and they don't like to do this unless it is absolutely necessary. She said his feet at this age are still cartilage which is why she couldn't see everything on the x-ray prior to surgery. But the hip bones are completely formed and will show up on x-ray so she is not expecting any surprises. After saying all of that, her intern came in and asked me to sign a new consent for the hip surgery. The funny thing is that there was something new on the consent form. She is now going to do bilateral arthrograms in the OR before surgery. They will inject a dye into the hip joint to look at the coverage of the femoral head better on x-ray. The intern said this will help them see how much of the head is covered so they can decide which acetabular osteotomy to do at the time, apparently there are several different kinds.

Dr. Vergun also stated that she would take the casts off in the OR before surgery so she could get his legs the same length and recast him again when she is finished with the hips. She agreed to have Bob Collins, our orthodist from Wilmington, to come into the OR and mold him for new AFO's after she removes the casts. Of course, upon completion of the hip surgery she will have to recast his feet to complete the healing process. I'm not sure how long all of this will take but it sounds lengthy.

December 12, 2018- We arrived at Ronald McDonald House this afternoon to prepare for surgery tomorrow morning. The timing could not have been more perfect because they were having their annual holiday party. Rayden certainly enjoyed making ornaments, dancing with the characters, decorating Gingerbread houses, but most of all he enjoyed playing with a sweet, young volunteer in the play room. He played with her for hours and even told me to leave!! He also received 6 gifts. We really appreciate all the Ronald McDonald House does for the families. They truly bring smiles to children/families facing difficult, trying times.

December 13, 2018- There is a mountain in our path. Rayden will be having his 11th surgery this morning, the biggest one so far! It is expected to take over 6 hours. I rely on my faith during these times. I know God has His hands on Rayden. I truly believe God sent me this song during the benefit sing earlier this month. It has spoken to me and I can't seem to get it off my mind. Just the thoughts of this surgery has brought me to my knees and this song brings me comfort. Please listen to the words of this song. Sometimes it takes a MOUNTAIN!

We arrived at UNC Children's Hospital at 9:30. Our check in time was 10am. I thought they would take Rayden back for surgery a little after 10 but I was so wrong. The wait was ridiculous! They didn't take him back into pre-op until 12:00! Rayden was very anxious in the pre-op area. He knew something bad was about to happen after praying with Pastor Brad. We try not to talk about things in front of Rayden now because he is so aware, but the anesthesiologist came in excited that she was getting to work on Rayden. She had done two surgeries on him before and remembered us, WEIRD!! She started talking about his difficulty with IV sticks, the possibility of a central line, having to go under his clavicle, cutting so much that he may have blood loss so she started talking about blood transfusions, etc.

I was amazed with his care nurse. She noticed how upset he was getting and asked if his brother could come back. She saw how super happy he was in the hallway with Alex. How observant of her! When Alex arrived Rayden seemed to calm down. Around 1:30 the anesthesiologist brought in some Versed (loopy medicine that will make him unaware of what's going on). I told them I didn't want to take him into the OR again because I didn't want him to associate ME with putting him in pain. I wanted to be the comforter. We noticed he started looking real drugged up and couldn't put the lids back on his markers.

About 20 minutes later they came with the wagon to transport him into the OR. He didn't cry or anything!!!! He kissed us all and went for a ride. The anesthesiologist gave him a light up, spinning toy and he was just fine! It was actually a little humorous. It was a relief to watch him go so happily. I normally break down because he is crying but this is the first time he didn't cry. What a relief.

Rayden went into the OR at 2:00. We all went down to the cafe to grab a bite to eat. At 3:00 the OR nurse called to say that Rayden was asleep and Dr. Vergun had just made the first cut. We walked around a bit looking at the Christmas trees throughout the hospital and then went up to the Ronald McDonald room on the 7th floor to sit in a quite, more comfortable environment. The OR nurse called back at 4:24 to say that Dr. Vergun was still working on the right foot. I settled into the recliner to try to rest but the OR nurse called back at 4:44, only 20 minutes later, stating that Dr. Vergun was coming OUT of the OR and wanted to talk to us now! I panicked!!!! Michael and I ran down the hall and into the elevator. Dr. Vergun met us when we got off the elevator. The first thing she said was "He's fine!" I started crying and my knees buckled! She said she didn't mean to scare us but the feet were so much worse than she had anticipated. She called in Dr. Campion to help her. She wanted us to prepare ourselves that she may NOT be able to complete the surgery today. She would explain everything later. At 5:21 the OR nurse called to say that Dr. Campion had arrived and they were beginning the left foot. Of course after this scare we didn't leave the 2nd floor again!! Michael and I walked back and forth down the hall for hours! There was a lady that came out of the PICU. She started talking about Michael's 'Dad' shirt and noticed the worry on our faces. She said she felt led to tell us that God has all of this under control. She said a lot more, but I don't remember it all. I just know I felt at peace when she left. She mentioned that she would be praying for us. I, of course, said we would pray for her as well. Then she commented that at this point she was just praying for a 'rest in peace.' I knew then that her child was dying. Michael and I started counting our 'blessings' and not our 'fears'. I truly believe God sent her at that very moment to send us peace. At 6:07 the OR nurse called back to tell us that the surgical team had decided NOT to do the remainder of the surgery. It was just too risky. He was suppose to have a Femoral Osteotomy on both hips, a Pelvic Acetabular Osteotomy on the left hip and Bilateral Clubfoot Release on both feet. They only completed the Clubfoot releases. At 8:00, approximately 6 hours after they took him back, Dr. Vergun came out to talk to us. She seemed upset and very apologetic. She knew how badly we wanted to get all of this done at one time so Rayden could heal only once but it didn't work out that way.

She stated that at this age his feet are mostly cartilage and not bone, therefore she couldn't see everything on the x-ray. She couldn't foresee what she came across during surgery. (Here again, Rayden doesn't follow the textbooks!) She said his bones are so deformed. They curve where they are suppose to be straight. His midfoot on both feet were completely dislocated!! She didn't know how he was walking so good. (Sometimes miracles hide!) When Dr. Campion got there he released a little bit more and they were able to get his feet 80% straight, which is the best possible outcome for the shape of his feet. Although they were not able to get 100%, she said they were perfectly plantigrade and the skin was all closed. She also believes this should be the last surgery he needs on his feet. That sounds wonderful! She said to expect a lot of swelling because they had to do a tremendous amount of work on his feet. This is why they all agreed not to complete the surgery because of the amount of swelling he was already having. It would only get worse and that was too risky. She wanted to keep him over night and might possibly have to bivalve the casts in the morning if they are too tight due to swelling. When she left, the anesthesiologist came to talk to us. She said although Dr. Vergun was having a terrible time, everything was perfect on her end of the table. She was able to get IV's on first stick and his blood pressure and vitals were stable the entire time. She wanted to warn us though because she had given him a tremendous amount of pain medication anticipating the hip surgery. She said this should make him sleep all night. She also mentioned that Rayden's heart rate elevated when Dr. Vergun was working on his feet which meant that he COULD FEEL something down there, how much we don't know! This was a completely new development. They put some numbing medication there just to make sure he was comfortable.

At 8:40 we were finally able to see our baby. They allowed Michael and I both to go back to the PACU to sit with him. He looked so peaceful lying there. They said he probably wouldn't wake up just like the anesthesiologist said, but at 9:20 he started looking around and said "There you are mommy!" the most precious sound I've ever heard. Michael asked him to smile for a picture for brother and his sweet face lit up. While the nurses wheeled him to the short stay unit for the night Rayden talked their heads off. He was saying he fell down the stairs that's why he had green casts. He was so funny, I think he was still a little drugged up. His little face was swollen so bad he could hardly open his eyes. This is because he was lying on his face for six hours during the surgery. But when he started asking for tea and ham we knew he was going to be fine.

It was taking so long to get his food and Rayden was so hungry he actually ate a popsicle. We finally got him a ham sandwich around 11:00 and he ate the entire thing and fell asleep. We have never been in the short stay unit before. It reminds me of an ER. It is a bunch of beds separated by curtains. No privacy at all. Needless to say, Michael and I didn't sleep at all.

December 14, 2018- The nurse continued to give Rayden IV antibiotics throughout the night but when he woke in the morning he started to spike a fever. It got as high as 101.8. When Dr. Vergun came in he even started coughing a little. She was concerned and wanted Peds to come check his lungs but she was pretty sure the fever was coming from his body working overtime to attack the trauma that just occurred. She said it was way too soon to have an infection this fast after surgery. Dr. Vergun was most concerned about Rayden's feet and legs swelling under the casts. She thought it was too much and they needed to relieve the pressure.

At 9:00 an ortho team came in to bivalve the casts. They cut them down both sides, popped them open a little and then wrapped them with ace bandages. This would give his legs and feet more room to swell without causing issues. Rayden was super brave during all of this. His heart was flying and he looked scared but he never cried. He would have to go back in a week to close the casts back down again. Dr. Vergun called back and said she cleared the OR for January 8 at 7am. She wants us to think about doing his hip surgery then. I told her we would think about it and let her know.

Peds finally came and said Rayden sounded fine and agreed that the fever was coming from his body's reaction to the trauma. They sent him home at 2:00. When we got home his temperature was 103! I was scared to death thinking something was really wrong. I continued to give him tylenol and motrin for two more days and all is well.

We can't thank everyone enough for your continued support, prayers, cards, phone calls, texts, food, and visits. You all mean the world to us.
Listen to Rayden's theme song, he is truly a WARRIOR!!!