June 3-We arrived at UNC at 6am. Even though Rayden was quiet, he remained calm and collected the entire time. They wheeled him back to the OR at 7:30am. After sedation, IV, and saddle nerve blocks, the procedure got underway about 8:00. Prior to today, Dr. Phillips had discussed a couple of different ways to create the opening for the flush. (Our first consult was Jan. 11, 2023) He really needed to talk with Dr. Ross, urologist, about her predictions of other surgeries in Rayden's future before making a final decision. They agreed to let Dr. Phillips use the appendix and Dr. Ross could use the belly button down the road (if needed).
He decided to do an Appendicostomy, better known as the Malone Procedure (MACE).
Laparoscopic Appendicostomy-Dr. Phillips made two small incisions for the instruments on the left side, one incision for the camera below the belly button, and another small opening on the right for the tube. Then he cut off the end of the appendix and bent it upward covering with the cecum (beginning of intestines). He stitched it in place like a hot dog inside a bun. Next, he attached the cut end of the appendix to the opening on the right side of his belly. Finally, he placed a catheter in the opening, going through the appendix and into the intestines. This catheter will stay in place for 6 weeks to prevent the opening from closing up while the rest of his body heals. Then we will be able to replace the catheter with a miniACE button.
Dr. Phillips came out about 9:30 to tell us the surgery went well, although Rayden did throw up on his shoes before going under. (They gave him too much medicine on an empty stomach.) We didn't get to see him in recovery until 11:15 because he wouldn't wake up. The recovery nurse and the anesthesiologist said the Ketamine (anesthesia), and Gabapentin (pain) were overkill and he would just have to sleep it off. They would shake him, yell, even do a very hard sternum rub with absolutely NO response. I was kind of worried but they said his vitals and all were fine, and moved him to his room on 7th floor Children's. He continued to sleep the remainder of the day! His entire body was so asleep that his heart rate was very slow, and his bladder refused to wake. We ended having to catheterize him to remove the IV fluids.
June 5-I was awakened around 5am by Rayden saying "Mom, I heard something." The flush had finally worked. 💩 Rayden refused to eat anything today. I got him to drink a carton of milk and a Gatorade. We tried to get him ready to go down the hall but I noticed he had poo in the Mace tubing. The nurse decided to go ahead with the second flush around noon. This time she added glycerine to the mix. As soon as the liquid mixture was finished and she walked out the door, he had to go! 💩 Success! The only problem was, he got very dizzy, and was in a ton of pain walking to and from the bathroom. He continued to be very sleepy throughout the day and started complaining about his back hurting. We started to worry about a possible UTI when I noticed debris in the foley tubing. Noone really seemed concerned and said they would take it out tomorrow. The nurse challenged him to drink another Gatorade before she came back and he took the bait! He had it drunk before she even left the room! His face lit up when Gina, a nurse from our previous lengthy stay, came to see him. She sweet-talked him into getting up and riding in the wheelchair downstairs with her (no parents allowed). When they returned he was a different kid! He was more talkative, took several laps down the hall (in the wheelchair) while eating a bag of Doritos, and went to the playroom. He even ate a ham and cheese croissant from Starbucks.
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June 6- Rayden woke at 3am in excruciating pain in his back. I quickly noticed there had been no urine output since 4pm yesterday. The nurse brought him some Tylenol and asked if he wanted something stronger. She sent the resident a message about the foley cath. We waited and waited. Then she brought some Oxycodone. She ended up sending 3 more messages with no response. I got so angry. I went to the desk and demanded that the charge nurse call up the chain. In the meantime, the nurse brought some Morphin. We refused to give him more medication without fixing the actual problem. Soon the resident gave them orders to flush the cath. Three different nurses tried with 2 different sized flushes but it wasn't budging. The cath was definitely clogged. The resident came up here with a plan to just move the foley around inside the bladder. I got real angry and told them no! It needed to come out! He disagreed with me and suggested taking it out, but replacing it with another foley cath. Again, I stood my ground and demanded they remove it. He was mad, and sent the nurses back in the room to do what 'he' said, but they knew better. As soon as they took the cath out it gushed blood and urine. There was quite a bit of blood in his diaper that must have seeped around the cath. At this point I was angry enough to text Dr. Ross, his regular urologist, personally. She immediately called me back. She told her resident to look into his care and weigh in. He told the nurses to do a bladder scan. If the volume was more than 200, he wanted her to cath. It was actually 569! During the in and out cath there was tons of bloody urine and debris. I have never seen it like this before. Dr. Phillips recommended an IV to flush the kidneys but Rayden said he would drink instead. He was suppose to drink 2 1/2 Gatorades before 10:00. He tried, but by 11:45 he had only finished 2. The nurse did another bladder scan that revealed a volume of 257. We took a bath and a walk around the hall to see if he would void on his own, but nothing happened. We got him to drink the 3rd Gatorade and ate 2 chicken nuggets by 2pm but had to cath again because he started having the horrible pain again. This time they sent the bloody urine for testing. We ended up calling the PICU team to put in another IV to help flush his kidneys. We did his flush between 6-7pm. The fluid seemed to come out as quickly as it went in. He threw up everywhere after his 8pm meds. His urinalysis report came back abnormal in several areas! It has been a very long day and looks like it's gonna be a long night. Michael and I decided to take turns. He took the first shift allowing me to sleep a little. I took the second shift.
June 7- Rayden refused to eat or drink all morning. When he sits up he starts burping and he says it gets hot down his esophagus. Sounds like reflux to me. The doctors decided to add sucralfate to coat his stomach and soothe everything. They also ordered labs, a urine culture and an x-ray of his abdomen to check for kinks in his intestines. We started walking a bit. This seemed to help his bladder wake up and void on its own again. No need for cathing or pain meds all day! WIN! Even though his labs came back fine, they decided to add ceftriaxone, an antibiotic, through his IV. His x-ray was normal as well. We got him to eat a little in the afternoon. We successfully administered the flush ourselves also.
June 8- Rayden woke around 4am in pain again. After bladder scanning and cathing, he went back to
sleep. He finally decided to take his meds and get out of bed around 10am. He's been eating good and his pain has remained tolerable all day. He fights me tooth and nail when I MAKE him get up and walk, but once he's finally on the move he's good. Tough love!! We even went to the play room and the sun room today. He played pool, ping pong, and foosball. His urine culture came back normal this afternoon and we administered the flush successfully ourselves again. The bright spot of the past two days was he had Gina as his nurse.
June 4-His bladder continued to sleep, so they ended up putting in a foley catheter around 6am. We asked the doctors and nurses not to give him any more pain medicine because he won't wake up. When he finally woke up around 6 in the evening, he was super mean, moody, very argumentative, hitting, crying, and pinching. We tried to be understanding because he was coming off some strong drugs and in lots of pain. Even though Nanny, Papa, Granny, and Alex came to see him, he didn't remember it at all. We were surprised that he actually wanted something to eat though. He ate an entire cheeseburger, most of a ham and cheese sandwich and drank 1/2 a carton of milk. The nurse put 250mL of saline into the Mace for his very first flush. She said it may not do anything, but we will see. After seeing him drink an entire Gatorade, she even took out his IV. Later in the evening, he started crying really bad saying his chest hurt and he was full up to his throat. We ended up giving him some Oxycodone for the pain and he went off to sleep.
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sleep. He finally decided to take his meds and get out of bed around 10am. He's been eating good and his pain has remained tolerable all day. He fights me tooth and nail when I MAKE him get up and walk, but once he's finally on the move he's good. Tough love!! We even went to the play room and the sun room today. He played pool, ping pong, and foosball. His urine culture came back normal this afternoon and we administered the flush successfully ourselves again. The bright spot of the past two days was he had Gina as his nurse.
June 9- Day 7 Rayden was finally discharged around 1pm. We were so happy to get him home, showered, and sleeping in his own bed. 💙
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| Gina and Bonnie |
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