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!