January 28, 2019 "Hip Surgery Incisions"

Dr. Vergun instructed us to remove the bandages in 10 days to allow them to heal with air. I knew they would heal better but I was extremely frightened to remove the bandages. I just kept thinking the incisions would open up and begin bleeding or they would get infected somehow. We finally got the nerve to remove them all 20 days after surgery.

Left femur and hip/socket incision bandage                     Right femur incision bandage

Left femur and hip/socket incision                    Right femur incision

Day 27  

January 10-12, 2019 "The days after surgery"

Thursday, January 10, 2019 Rayden was able to sleep a little better last night even though they continued to wake him for meds and vitals. He was up at 6 am ready to watch his ipad. Michael and I were able to change his diaper together without the nurses help this morning. WIN!! We thought things were looking up. He only drank some chocolate milk this morning but threw that up when I gave him his colace medicine. We need to try the potty system today because allowing him to get backed up will cause another problem and now that he is throwing up, things are getting sketchy. The nurses are just not familiar with the Peristeen system and how it is administered so in this case Michael and I are the experts. It took us a while to talk out all the scenarios of how to get him onto the bedside potty with his legs straight out. We tried potty time around 10 am unsuccessfully. I asked for some prune juice with an adult amount of miralax. It arrived around 2:00. After drinking this we took him to play in the music room again. This time he used his right arm but still wouldn't use his left one because it had two IV's in it.

Around 3:30 we wheeled Rayden into the hospital school for some one-on-one science time. He made green snow. Now that was exciting. The more water he put into it the more snow he got! Rayden continued to say, "This is the coolest!" and "I love this!" It was wonderful to see him smile and have fun.

When we returned to the room I asked the nurse if she would take out his IV's so he would start using his arm. When she did, he began using it immediately like it was cured! It was kinda funny. He seemed to be feeling better and even asked for pizza from the Ronald McDonald room. After eating half a slice (the only thing he had eaten ALL DAY) he threw it all up!!

I began to worry about him being backed up. Dr. Vergun came and said since we are keeping his pain under control with oral pain meds he could go home IF we could get his bowels to move. She didn't feel comfortable sending him home with a possible blockage, neither did we. She also asked the nurse for some sticky, plastic wrap to put over his incisions in case the prune juice caused a blow out. She wanted us to protect the incision sites. We tried the Peristeen potty system again around 8:00. This time we were somewhat successful. After transferring him into the bed he started asking for food! I knew then that he was going to be ok. He ate a banana, half of a peanut butter and jelly sandwich and drank a carton of chocolate milk.

Friday, January 11, 2019 The night nurse did not wake Rayden all night. Although he got a good nights sleep he woke up screaming in pain around 6 am. I called for meds and began packing up. When Dr. Vergun arrived the first thing she asked was "Did we get anything?" referring to his potty time. When we told her it was successful she went over discharge expectations. Rayden is not allowed to bear any weight at all on his legs or hips. He is to remain on the couch or in bed until we see her in 3 weeks. We can take the pillow out from between his legs if he tolerates it. It is mainly for his comfort by keeping his legs still and apart. We can sponge bathe him because we cannot get the casts wet. He can take Tylenol and Oxycodone every 5 hours for pain. We can take the bandages off in 10 days to let them air. (Certainly don't want to do this!) The swelling in his abdomen, groan and upper thighs can get very bad. (He's already huge and all shades of purple, green and yellow!) If the bandages get filled with blood of course we have to call her. We were sent home with a bedside potty seat and a small wheel chair. When we see her on Feb. 1 she will take the pins out of his feet, and bivalve the casts so we can go Feb. 2 to see Bob in Wilmington for new AFO's. He will remain non-weight bearing for another 3 weeks allowing the hips to heal. Then the physical therapy will begin to get him back up and walking! Another surgery will be scheduled in a year to remove the plate and pins from his hips.

We were discharged at 10am. Rayden did not sleep all the way home and screamed "WE'RE HOME!" when he saw our house. So precious. He was so happy to be home. He did not sleep the rest of the day either and ate a very good dinner. Of course Michael, Alex and I had to figure out how best to do things for him at home.
Saturday, January 12, 2019 You would think that Rayden would have slept much better being in his own bed but that was not the case. He wanted Momma around 3am and I had to lay down with him until we got up at 6am. He is adjusting well to staying on the couch. He still wants to be covered up with the blanket at all times because he hates to see his bandages, casts and pillow (we cannot put on any shorts or pants). The pain meds are constipating him so getting his bowels to move continues to be a challenge. He is much better with diaper changes but it still takes at least 2 people to do it. I can't pick him up with both arms AND take off the diaper AND put down a new one all by myself.

You can tell he is in pain. He grits his teeth and moans but he doesn't scream in pain anymore. He is the definition of a WARRIOR!! He just keeps getting stronger and stronger. He has a distinct cry when he is in pain. I can tell, even though he continuously screams "I'm fine" and answers "Nowhere" when I ask him where he is hurting. He tries so very hard to be brave and show no weakness. He is the bravest, strongest, most courageous four year old I know!

January 9, 2019 "Surgical x-rays-Day 1 after surgery"

Wednesday, January 9, 2019 The nurses continued to wake Rayden and myself throughout the night to get vitals, and give him round the clock pain meds. I was pleased they didn't try to change his diaper or move him like the other nurse said. They let him get as much rest as they could. He was up and asking for his ipad about 5:30am. I ordered him some pancakes but he wouldn't eat a thing! I knew he wouldn't eat with that IV still in, so they disconnected it but left it in his arm in case he still needed pain meds. He was still in so much pain. We changed his diaper again about 6am. He didn't tolerate it any better this time either. It took three people this time, and the nurse wanted to put a chuck under him to help roll him. This was excruciating for him!! I can't even put it into words. Rayden could not tolerate anybody touching him and rolling him around onto the hips he just had reconstructed!!! I can only imagine the pain he was feeling and it was killing me to see him like this.
Around 7:30 Dr. Vergun and her intern came into the room. She didn't want us to try his potty system today because of his pain level. No one wants him to get backed up but we don't want him in agony either. Maybe two days with no poop would be ok. (Keep in mind Rayden has neurogenic bladder and bowel.) She explained the surgery again but this time she had x-ray images to share. It really made things much clearer for us.

1. This first image is BEFORE surgery. You can see the femur (leg bone) is straight with a dot on the top. This dot is the ball. His leg is shaped like an 'i' but it should be shaped like an upside down 'L'. The ball should be inside the 'V' shaped hole (socket). The 'V' shaped hole should actually be 'C' shaped. What a challenge!

2. She cut the femur with a saw and turned the portion she cut into the "V" shaped socket. Then she rotated the femur so it was straight, 15% NOT 60% inward, and attached it to the portion she cut off with a plate and four screws. 

3. In this third image she was checking the placement of the ball and socket. It is taken from the side so you can see the outside of the plate down his leg. 

4. In this image you can see where she grafted bone from his upper pelvis and reconstructed his socket that was 'V' shaped and made it 'C' shaped wrapping the ball correctly. 

Around 8:30 Alex arrived and was able to get Rayden to eat some home fries but nothing else. He will do anything for his brother. Soon Courtney, the physical therapist, came wanting us to get him out of the bed. I thought she was crazy! He couldn't even tolerate us rotating him to change his diaper and this woman wanted me to pick him UP OUT of the bed!!! 9:30 I bucked it as long as I could but soon she showed up with a little wheelchair saying it was time. She wanted me to put one arm under his shoulder blades and the other under his knees and lift him straight up, rotate my body and lower him into the chair. Keep in mind that he still has a purple foam pillow velcroed to between his legs too. Michael and everyone else left. They knew this was going to be bad. Rayden began crying immediately. I think he was scared of the chair. 

Of course, I had to be strong for Rayden so I tried. He was alright when I put my arms behind his shoulders but when I placed my other arm under his knees he started screaming. This scream sent chills through my body and I just fell to the floor laying my head on his bed and cried saying "I can't do it!" Courtney encouraged me to get up and try again. I had to be strong for Rayden. If he was going to get better SOMEBODY had to help him out of this bed. I got myself together and tried again. This time I was able to transfer him into the chair. Once I sat him down he stopped screaming and wanted Alex to push him around. I knew then that he was going to be ok. We took him down the hall to play the Wii for a while then rolled him into the play room. 

He wanted to look at things but he would not lift his arms to play with anything. He acted as if he were paralyzed. It didn't take me long to realize he wouldn't use his arms because he had tape on them. (He HATES tape.) No matter how much we encouraged him to use them, he could still SEE the tape and refused. When I saw the music room in the corner I knew this would make him happy and he may actually use his arms. The entire family got an instrument and we made happy music. Rayden played the xylophone a little. You can see on his face that he was still in pain but he sure tried, and we actually got a smile or two.  

We played for about an hour and then took him back to the room to try to eat something. Of course he didn't want anything to eat. This was beginning to worry me. I realized he only had one bandage on his right arm so I took that one off so maybe he would start using it. After his nap I transferred him back into the bed. Yes, this was very, very painful for him but with every transfer it will get better. 

Around 5:00 he started asking for Legos. Alex and Michael went down to the play room and brought him some back. He began to play using his right arm and we got our first genuine smile!! While they were in the play room they saw a target shooting game and asked if he could play with that too. The lady in charge told Alex he could have that because they couldn't keep toy guns in the hospital. Rayden really enjoyed shooting the target. He even started laughing! 

 

Throughout the day we continued to monitor his pain level and tried to get him to eat anything!! Finally Papa thought he might eat some Vienna sausages. (He will eat them when he won't eat anything else.) Michael and Alex went down to the little drug store inside the hospital and got him some. He actually ate four of those sausages. Maybe things are looking up. When Rayden only had casts he hated to look at them so we kept socks over them. Now that he has bandages, pillow, and casts he screams every time we take off the blanket to move him. As long as we keep the blanket over him he seems to tolerate it fine. 

January 8, 2019 "Surgery #12- Bilateral Femoral Osteotomies with Derotation, Left Pelvic Acetabular Osteotomy, Bilateral Arthrograms and Casting #23"

Tuesday, January 8, 2019 We arrived at UNC Children's Hospital at 6:00 am where we met Nanny, Papa, Granny, Alex, and Bob Collins (orthodist). Rayden seemed happy to see everyone but I could tell he was wondering why they were there. We went straight up to the 2nd floor where we were greeted by a nurse saying "Welcome Back!" (I don't know what to think about the hospital staff recognizing us...) They took us straight back into the Pre-Op, no waiting this time. Of course, we went through the same procedures of weighing, changing clothes, taking vitals, signing papers, decorating a gas mask, talking to anesthesiologists and docs. Bob joined in trying to keep Rayden's mind off of what was happening. Dr. Vergun went over what was going to happen again with us. After they got him to sleep she would cut off the casts, Bob would mold him for AFO's, Dr. Vergun would wrap his feet and do the hip Arthrograms (injected die to get x-ray images). After viewing the images she would begin working on the hips, cutting the femurs, putting the balls into the sockets, grafting bone to reshape the socket, turning the leg to a straight position, making sure the legs are the same length, screwing in the plates to hold it in place, taking new x-ray images, and finally recasting the feet. Of course this had to be done on BOTH legs so she expected it to take about 5 hours. 

They gave him the versed to make him loopy around 7:15 and took him to surgery at 7:40. Bob gowned up and went with him. Apparently this anesthesiologist didn't have as much luck as the last one. She had to stick him five times for 1 arterial vein and two IV's. (At least he was asleep during all of this.) Dr. Vergun cut off casts #22. She and Bob examined his feet and said they are healing wonderfully and the skin looked great. Bob molded Rayden for AFO's and came out of the OR about 8:30. The long wait was excruciating for us. We ate breakfast in the cafe and went back to the second floor to wait. We sat in the window seats, walked the halls, played solitaire, walked some more, etc. At 10:30 I had not heard from the OR so I asked the hall nurse to call back there and give me an update. She said they had finished one leg. I thought this was wrong but at least it wasn't a bad update. By 12:30 I went to ask for another update. This time the nurse said Dr. Vergun was finished with the left leg and was starting the right. I was confused but again, at least it wasn't a bad update. Around 1:30 (6 hours in) my worry took over and I felt like I was going to pass out. Michael went with me to the bathroom so I wouldn't pass out in there with the door locked. Instead of passing out, I started throwing up! I kept telling myself I had to get it together, that Rayden needed me. I began to pray for God to ease my fear and worry. We stayed in the bathroom for about 30 minutes. 

At 2:00 (6 1/2 hours in) we opened the door, Michael looked down the hall and saw Dr. Vergun looking for us. She said the surgery went well but was very tough. She said his hips were a mess so it took her longer to fix. She had to take bone from his pelvis to fix the left socket. He lost too much blood and had to have a tranfusion. She also said his femoral anteversion, the inward rotation of the femur bone in the upper leg, was suppose to be between 10-15% but his was 60%!! This is what was causing his knees and feet to turn inward. She said all of this just validated that he REALLY needed this surgery and she would explain more tomorrow when she shows us the x-ray images.  

At 2:40, 7 hours later, I was able to see Rayden in the PACU. He had morphine and fentanyl in the OR so he was really out of it. He was in and out but every time he woke up he was calling for Momma. I am so thankful God helped me through my anxiety and that I was able to be there for him. He had two IV's and an arterial line. He had two short leg, carolina blue casts, and a foam purple pillow velcroed to his legs to keep them separated. He had three incisions-one on the outside of both legs and one in the left groan. The nurse wanted him to drink some juice but he never would. At 3:20 Rayden was transported to room 7Ch10.  I wanted him to have his pillow that Barbara Pollard made for him so I lifted his head just a little to place it and he screamed out in pain. This broke my heart! He was in so much pain! He couldn't even lift his head, he wouldn't move his arms!! How bad is this going to be?!!?? 

By 5:00 he was asking to watch his ipad even though he was in and out. The nurse stated that they were going to have to move him every four hours throughout the night to prevent bed soars and blood clots. I thought I was going to die. He just had both legs CUT OFF and was in so much pain and you want to move him?!!?? She gave him some Tylenol and Oxycodone and came to move him around 6:00. He could not tolerate even lifting one hip to place a pillow underneath. That's when I knew this was going to be really bad on my Warrior. 

By 6:30 when Carol and Ray Fisher and Uncle Gerome Heath arrived he was really out of it but woke up just long enough to say "Hello" and "I love you." By 8:00 the nurses wanted to change his diaper. OMG!!!! It took 4 people (3 nurses and me), everybody else left the room. They began to roll him onto his side and he screamed out in agony. I mean PURE AGONY!!! It about killed me. I have never heard him scream like that before. After it was all over and Rayden was back asleep I turned my head to cry. Rayden could not see me get upset, I had to be his rock, but this was killing me! The only thing we got him to eat was some "red" icecream (strawberry). He ate it trying to race his brother. Even though it took him a very long time to eat that small cup, he still won, haha! By 9:00 he was out for the night.