Our two rest days were spent getting fevers and being started on antibiotics. I was disappointed because in rounds on Friday they had just said that Cade could take a day pass both Saturday and Sunday since he had nothing going on either day. Then in the middle of the night Friday he spiked a fever to 102. Chris and Rylan were coming to visit Saturday and my first thought was…well there goes our day pass opportunity. They sent blood cultures, but his counts looked good so they held off on starting antibiotics and still let us go on pass Saturday, which I was so excited about. Of course it was cold and rainy, which gave us little options of what to actually do with our day pass. So we did our usual. We went to Starbucks for coffees and hot chocolates. Haha. Then decided to go to Target and let the boys play in the toy aisles for a little while and look at everything. We spent a lot of time in the paw patrol and lego sections. Shocking. By the end of our Target play date, we could tell Cade wasn’t feeling well. We came back to the unit so he could get a couple meds and then we were going to go get some lunch. But he quickly changed his mind and seemed exhausted. The nurse checked his temperature, and sure enough he was creeping back up. He was started on IV antibiotics, which would continue the rest of his stay here, and there went our day pass for Sunday. As well as our chance to get our 3rd and final swab for the MRSA so we could get off of isolation. I was so frustrated. But I give up. For some reason or another, he is meant to stay on isolationand remain in this room. He at least was negative for the enterovirus finally so everyone could stop wearing the masks, which is good. It’s nice to get to see everyone’s full faces again when they’re in here.
Monday he got his cells. He actually got a full tune up that day. Platelets, blood, and 2 bags of stem cells. This was his biggest stem cell transplant that they purposely saved for his last one when he would need it the most. Hopefully this will allow his body to recover and hold his counts without the need for a lot of transfusion support. The week has gone good overall. His blood cultures never grew anything and he has not had fevers again since. Knock on wood! We have tried to keep busy in our room doing puzzles and legos. Enjoying visits from Aunt Shalina, Grandma Kathy, Aunt Karen and the girls, and of course daddy and Rylan. Last week we even got surprise visits from Grandpa and Great Grandma Eileen and even Daddy! Daddy’s surprise visit came at the perfect time as that morning Cade was asking me who was going to visit and he was so upset when I told him no one was coming. Clearly he is tired of seeing my face every day. So when daddy unexpectedly walked through the door, Cade just lit up and jumped in to his arms with excitement. It was precious.
He did end up having mucositis again in his gut we think given that he began to have issues only at night time when his feedings were running. He would throw up several times and/or have to go to the bathroom a couple times. You can also tell by the appearance of the stool if it’s mucositis and the mucosal lining almost shedding out. We tried to slow the feedings down, but it didn’t help eliminate the issues. So I tried to have the nurses give Ativan twice through the night to try and hold him over. It seemed to work and he didn’t throw up the first night until that morning when he woke up. So I had them continue to do this, and he has not thrown up since Friday. Last night I had them only give one dose at 9pm and still no throwing up, which is great. I’m hoping this means his mucositis is starting to subside. Today he has got platelets and he will be getting blood later this afternoon. Poor baby definitely needs it. He’s very exhausted and irritable and is actually sleeping next to me right now. I could tell he was so tired when we were trying to do puzzles and sticker books, so we layed in bed to snuggle and watch a movie and he passed right out. My sweet boy.
This past weekend he got to spend with daddy, which he enjoyed, and I went home and spent a couple nights at home with my Ry. I walked in to the house to a beautiful vase of roses and a sweet card. I absolutely love “just because” flowers. I am so grateful to have such a loving and thoughtful husband who enjoys doing things like this for me. It makes me smile and warms my heart. Yesterday afternoon I came back so Chris could get back home for his work week. So here I am, with my sweet guy snuggled sleeping beside me with his arm over top of mine as I gently try and type. Now we are just waiting. Hoping that his counts start to return in the next day or so, which would put us one day closer to being able to go home. As I dropped Ry off at daycare yesterday morning he asked me if the next time I get to come home if it will be with Cade for good. I said yes honey, it will be ❤️ Prayers to God that it will be.
Our Warrior Journey 