Sunday morning we were looking forward to celebrating Father's Day. Steve had planned to meet his family with Sadie for breakfast to celebrate and later in the day we had plans to head to my parents for lobster, steamers, and grill food.
Saturday night Seth was up for a few hours and was difficult to get settled. After giving him Tylenol and not settling we gave him some pain medicine. He seemed to settle down for a little while but in the morning he was still more irritable than usual.
I headed downstairs with the kids so Steve could maybe sleep in a little bit. Sadie was anxious for Dada to come down and give him his gift so unfortunately he didn't get to sleep in too long. She was so excited to give him his gifts and was more than happy to take pictures of the one of a kind items.
Around 8am Seth was still pretty uncomfortable but then started shivering and sounded like he was breathing really fast while I was holding him. I called Steve downstairs and he put a call into the Jimmy Clinic and soon after he was headed into Children's with Seth.
Seth had a fever of 39.5 which is one of the highest he's ever had and his heart rate was extremely fast, in the 200's. His blood work came back and everything was still looking good so we needed to wait for the blood cultures to come back. He was sent for and x-ray of his belly due to the bloody stool and it showed air in his intestines. They explained to Steve that he had a bowel infection and would have nothing via his stomach or G tube until the infection cleared. He was put on 3 antibiotics as a result.
Sadie and I headed to my mom's and I would go to the hospital later because Seth was still very upset and hard to settle.
I got in around 6pm and shortly afterwards the resident came to visit and give us some information on what the plan was. Not too much longer she came back and told us Seth's cultures had come back positive for bacteria. This is the first time we've ever had this happen with all the cultures he's had drawn. They weren't sure what the bacteria was yet and wouldn't know for a few days but hopefully the antibiotics he was on would start fighting the infection. Once they knew for sure what it was they could change the treatment if necessary.
It wasn't the Father's Day we had planned for but we made the best of the night by playing Heads Up and getting out of the hospital for some dessert.
Seth was still pretty upset when we got back and wouldn't let Steve sit with him while he was sleeping but would with me. I decided to stay because I wanted to hear what our normal team had to say about his condition and the treatment plan. He spiked a fever again around 11pm with the shivering and fast breathing again. So scary to see him like that and not being able to do anything for him.
Monday morning Seth was still really upset. Kate came to check on him early and we talked about how the morphine he was receiving wasn't lasting the whole 2 hours. He was very puffy from all the fluids he's receiving and just uncomfortable. She would put the orders in for a PCA so he could receive the morphine continuously and avoid a lapse in coverage.
Dr. Chi rounded later with the team and told us the infection in Seth's line was an M negative rod infection. They would take cultures daily to watch the infection and hope it responds to the antibiotics. It is a possibility that it could not, which would mean his line would have to be removed, he would have to be free of infection, and not neutropenic (which is most likely coming as his counts drop) before he could receive a new one. This would involved everything being done through peripheral IV'. The thought of that for him with everything else he's already having to go through is awful. We are crossing our fingers, toes and everything else that isn't the case so he doesn't have to go through 2 additional surgeries. He will begin nutrition through his IV called TPN later in the day.
Seth went for another x-ray of his belly because of his visible discomfort and later in the day the PCA for morphine was set up and then increased because he was still visibly upset.
The general surgery team came to see Seth and explained that the damage to his bowel was rather severe. This type of infection in a child of Seth's age is uncommon but because of everything else he's going through he is more susceptible to infection. He will definitely have nothing through his stomach or G tube for at least 7 days but could be upwards of 14 to give his gut a rest. They will be watching him closely to see how things are progressing.
Now it's a waiting game. Hoping this infection clears with the antibiotics and Seth starts to feel better because he is so uncomfortable.