A crappy week it was. Literally. Cade was already to and from the PICU and then positive for enterovirus. Then come Thursday we found out that to our complete shock and disbelief, he had tested positive for a GI bacteria called Colostridium Difficile. Aka as Cdiff. Due to the fevers that had started the week before, Cade had been put on 4 different antibiotics at the same time to cover all possible strains of infection risk to him. Well when we are on a lot of antibiotics it wipes all the healthy normal flora from our GI system, and in severely immune compromised people, this sometimes allows the Cdiff bacteria to become an active infection. Cdiff causes diarrhea. A LOT of diarrhea. And can cause abdominal cramping as well as fevers. Now we were all at a loss for what was causing what. Did he actually have mucositis causing the diarrhea and feeding intolerance that we suspected last week? Or was it the Cdiff starting all along? The enterovirus could have just been respiratory, or it could have been adding to the diarrhea. But was the bad abdominal cramping and tummy pain actually from the Cdiff infection? Not knowing the answers is sooooooo frustrating for me.
But we at least had one answer for sure. He was positive for it and it needed to be treated. Of course it is treated with another antibiotic. He was started on Flagyl right away that afternoon and will be treated for 10 days. Because of the constant diarrhea, we began just wearing pull ups to save on the accidents…and the laundry. His butt was beginning to get super read and broken down, so we were using special soaked wipes and tubes and tubes of butt cream. It was hurting him so badly that it got to the point of him telling me he was scared to change the pull up because it was gonna hurt. He would scream and cry no matter how gentle I tried to be. I just tried to keep explaining things to him like we have to get the poop off as soon as he goes because that is what is hurting his skin. That he would only be in pull ups for a little while and it was ok to have all these accidents. That once the infection got better, he could go back to wearing big boy underwears. That it was ok to be sad, scared, angry, etc. Friday morning as I was forcing him in to the bathroom to change his pull up for the 4th time in the hour, he stood in there and screamed at the top of his lungs. Twice. I asked him why he was screaming? Was it because he was angry or sad or scared? He replied to me, also with a good deal of force behind his voice, that it was because he was angry. Rightfully so. I agreed with him that this all sucked and he has a right to be angry and just reassured him that things were going to get better eventually. Poor baby.
Due to the infections he couldn’t leave the room on top of it all. He was very upset about this initially. As he should be. He was mad at me telling me I was mean and it was all my fault. After a couple days he got more tolerant. We tried to make it fun in our room. Kelsey from child life was a wonderful help. Finally by Sunday he was starting to slow down on the frequency of the diarrhea giving his butt a chance to try and begin healing. Chris was off this weekend so he came up Friday and we traded out. He spent the weekend with Cade and I went home and got to spend the weekend with Rylan. It was really nice. Friday had a night out and went and got his Halloween costume, then went out to dinner and ice cream. I had asked him what he wanted to do for the weekend. Expecting him to ramble off all sorts of exhausting things like bowling, arcade, movies, etc. To my surprise he replied to me, “I’d really love it if we could go in the basement and get all of our Halloween decorations out and decorate the house.” ❤️ So that’s what we did. I had no intentions of doing my usual decorating this year, despite how much I love to do it. I just didn’t have the energy. But when he said this, I realized how much he needed this. He needs his life to be as normal as it possibly can throughout all this. And I’m so glad that we did. Saturday morning we went to his soccer game, which grandpa joined us for, and then we went and played at hobby lobby, came home and played with planes outside, and then Ry and I decorated and finished the night with a nice dinner. I enjoyed a couple glasses of wine (that I bought at 8am when we went to get Starbucks. Yes I was that person) and a surprise visit from my brother.
Thursday his counts were zero. Friday morning we joked that we were back on the board with a white count of 0.1. Haha. By Sunday he had gone up to 0.9 and Chris had called me to inform me that the doctors were planning to restart feedings and that if Cade tolerated them then he could go home. I was shocked. There were way to many loose ends and things that needed to be done and questions to be answered, not to mention the fact that he was needing platelet and blood transfusions that day too, so I told him to tell the doctors no thank you. I’d rather wait until Monday to make sure he tolerates feedings as well as all of his medications being changed over from IV to oral. I got back out to the hospital late afternoon so Chris could get back home. Feedings went good, he tolerated them without any issues. He is still having some diarrhea, but this is expected. It is improving and hopefully will continue to do so each day. Despite the longest and most disorganized discharge I’ve ever experienced in my life, I will spare you the details, we were pulling in to our driveway by 4:30pm. Cade is home! And he is so happy to be home, it is adorable. Him and Rylan were melting our hearts. He will need blood draws and his usual hearing and kidney tests and his blood work needs to meet a few specific requirements in order to start Round 2. Tentatively they are hoping he will be able to start next week so our plan as of now is to be admitted next Wednesday and start Round 2 first thing Thursday morning. We were used to getting 2-3 days off between rounds, so we are very excited and grateful to get to be home for almost 10 days. Home sweet home.
Our Warrior Journey 