RIME Disease- The worst month ever

 

Not all posts are happy and this one just flat out sucks. McCoys story starts at the end of June. He had a cold with a cough. It didn't seem to be feeling better after a few days so Cass took him to the Dr. to get checked out. on July 1st they told us he had walking pneumonia. He was put on meds and was told he would feel better in 24 hours. On the 4th, he started feeling great and by that evening, he came with us to the Leifsons for a 4th of July party. He was running around and having a great time. That night he had a canker start to show up in his mouth,, but it was no big deal. He had a couple of cankers on Saturday, the 5th and that night we went to JCW's for Quaid's Birthday. He only felt like having a shake because it hurt to eat. 

Sunday morning I took him to instacare because things were just getting worse. They said it was an allergic reaction to the pneumonia medicine. We changed up his meds and came home. He rested the rest of the day. On Monday morning Cass took him to Alpine Peds where they said that he had cold sore disease. On Monday evening, we still weren't feeling good about it and I called the nurses line. She said it sounded like hand and foot. We were trying to get things figured out as Cass and I were in charge of Youth Conference starting the next day. Cass was messaging with McCoys soccer carpool and happened to send a pic of McCoys mouth. Andrea Mumford showed Scott and he immediately called us and wanted to do a video call with McCoy. He said it was Stephen Johnsons syndrome and we needed to get to Primary Childrens in SLC immediately.  Cass jumped in the jeep and headed to SLC. Over the next couple of days as symptoms developed, they decided it was RIME disease. 

After a few hours they were taken up to his room and started checking him out. It was a long night and by the next morning things had gotten worse. He kept going down hill with his mouth getting worse and worse and his eyes swelling shut and hurting to the point that all he could to is lay there in the bed in pain, in the dark, with a rag on his face and moaning in pain as his mouth continued to blister and shred and his body was slowly covered in giant painful blisters. The blisters took over his entire body including his privates. This was the horrible depressing case until the next Monday (7/7) when things started to slow down. During that time, on Wednesday they decided to get him set up with a feeding tube (his last food was that shake on Saturday). It took 3 tries to get it placed, each time was horrific, and in between they needed to wait for an x-ray, and then again for someone to read the x-ray. That process took 8 hours by itself. 

The blisters started to pop, causing painful lesions all over his body that hurt and itched and caused more pain. Monday and Tuesday were met with slightly less pain, but overtaken by his depression from laying in a bed with his eyes closed in pain for a week. It was awful to watch the poor guy. The entire process has been so emotionally draining. We've cried and cried, and laughed and cried, and tried to be strong for McCoy, but there have been so many times where we didn't know how this would end and it was super scary.

On Monday we did start reading to him. During the rest of the stay I read 1 1/2 Hunger Games books with him and Cass read the Christmas Pig to him. On Tuesday night (7/15) he had a couple bites of Mac and Cheese, which was a great sign. On that day he started to turn a corner and made daily progress from there. On Tuesday night he cleared pneumonia protocol and was finally able to leave his room. We started going on a couple of walks per day after that. The hospital had a teen room to hang out in and he made a cool shirt in there and played video games this week. By Thursday, he was just itching to come home and was starting to show a lot of improvement other than his eyes, which still throbbed non-stop. 

Things have continued to improve and he got to come home today, 7/19, after spending nearly 2 weeks in the hospital and over 3 weeks dealing with issues from pneumonia. We still have a ways to go, but are excited to get him home and have him finish his healing. 

A couple of things we want to remember. 

• People have been SO kind to us. Our ward was praying and checking in on us daily, multiple times a day. The youth had a special fast for him. They brought meals and encouragement throughout the whole process. Our friends were also so great, checking in, Shauna taking the boys and visiting, Lindsay and Raquell sending money, Matt Peterson sending Blue Bell ice cream, Meg lining up Cosomo to come visit him. Our family being awesome, Deanna coming up to stay with us, Ash and Emily taking the boys each day for the last couple weeks for a few hours. The neighborhood kids made signs. McCoys friends checked in on him daily. There were people that we have not talked to in some time who heard about it and were checking in on us. We got mystery gifts on our front porch, and his name was on probably every prayer roll in every altar of every temple in Utah. We are so blessed by having so many people who care about us. It was a reminder to not hold off on checking in on people. Some people may want their space when they are going through a trial, but I bet most need you support and don't know it. 
• Miracles are all around us. While we were in the hospital, the youth of the ward did a special fast for McCoy. It was overwhelming. Things did not go as well or as fast as we wanted, but we could feel the love of our ward and our family and friends and it sustained us. Scott Mumford later told us that there is no way he should have been there to get McCoy referred to the hospital. He hikes Timp EVERY Tuesday morning with his friends, but he had a bad feeling on Monday night and decided to stay home, which led him to stay up late. Andrea's phone is always on silent and in her pocket, and he NEVER checks it, but for some reason, when Cass sent the text to the soccer car pool, he jumped up and grabbed it.