Happy Easter everyone! I guess Gus had so much fun spending Christmas in the hospital that he wanted to spend Easter there too. We were called in Thursday night by the on-call doc. Gus’s blood cultures came back positive for a bacterial infection. I brought him into the ER around midnight and he received antibiotics and they did a chest x-ray because of his congestion. The x-ray revealed a slight touch of pneumonia, completely unrelated to the bacterial infection. Early Friday morning we were informed that his CVL line had to come out because of his infection. This was not such a bad thing because he really doesn’t need it anymore. The only issue was that his platelet count is still very low, especially for surgery. So he was given a transfusion before surgery. After surgery he was feeling great! He was making jokes with all the nurses and all smiles and giggles. He did great yesterday and is still doing great today, other than being a little sore from surgery. His results came back clear yesterday for C-diff. Hooray! So we were able to get him out of his room for a while and play. He will be getting a port put in to replace his line on Monday and we will be able to go home after his surgery, hopefully.
Last week I spoke with Dr. Mazewski about several issues we are having with Gus. The first thing we talked about was the plan for treatment. He will start oral chemo at home in a few weeks. This is nothing like what he was getting in the hospital. About 20% of the patients treated on this regimen experience side effects such as hair loss, nausea, vomiting, and low counts. We should probably expect nausea and in Gus’s case vomiting, but his counts should not wipe out. In fact, he shouldn’t even need any kind of transfusion. He will probably be on this course for a year. His platelet count is still too low to start, so we are waiting a few weeks.
The next thing we talked about was the continued vomiting. We have tried all the meds and it feels like we’ve tried all kinds of methods with feeds, etc. The vomiting continues, at least once a day. She said that because Gus’s tumor and surgery was right at the nausea center in the brain, something could be haywire. Who knows. It is still a mystery to all the docs. She asked if we were interested in trying alternative medicine and I said yes please. She suggested acupuncture therapy and I was intrigued. She said some of her patients have had success with it in controlling nausea and vomiting and it would also be great for his physical and occupational therapies. She recommended a doctor that used to work for Scottish Rite. She has a practice and one of their areas of specialization is pediatric acupuncture. So I will be looking into this and trying to get insurance coverage.
I also talked with her about getting Gus eating again as well as getting him into a school we found for him. I will go into further detail on those topics in my next post. For now though I am still sick and very tired. Poor baby Audrey has now gotten our cold, too. I hope everyone had a lovely Easter Sunday. We had a great day hanging out and playing with the kids (even if it was in the hospital.)