Today (Saturday) is exactly one week since Moses was discharged from the hospital. He was in great health and spirits for most of the week (with the exception of an ER visit the day after he was discharged due to very intense abdominal pains, which thankfully passed quickly).
We saw his Infectious Diseases Specialist on Wednesday, four days after he was discharged to talk about his medications. He finally stopped Linezolid (the super antibiotic) on Sunday, and was back on his prophylactic antibiotic (Keflex), which he has been taking twice a day for more than three years since he was first received his diagnosis when he was 4.5 years old (read about how we reluctantly started him on them here). Essentially, one of the main medical recommendations is that a person with his diagnosis be on a prophylactic antibiotic for life. I have been wanting to get him off of them ever since we started them, but I didn’t have DH’s buy-in since Moses’ diagnosis is such a serious one and he wanted to listen to the doctors. Our compromise has been that since he is on medications, I have been able to use natural healing methods (essential oils, homeopathy, energy healing), even if DH didn’t agree.
Every few months or so, I have reminded DH that I wanted Moses eventually off of Keflex. Over the last few months, I’ve been noticing that DH has been more open to the idea, since it doesn’t seem like the antibiotic has actually been doing anything to prevent any illness, and it’s just wrecking havoc with his intestinal flora. On Wednesday, I asked his Infectious Disease Specialist if we could stop the Keflex, and she admitted that she often tries to minimize antibiotics, but in Moses’ case, she feels that it’s important, especially during this time of year (flu season). She thought it might be helping him be pneumonia-free. But, she conceded that she would be willing to entertain “taking a break” from Keflex over the summer, and seeing how he responded. I felt this was a huge step in the right direction.
On Wednesday, she was very pleased with how Moses was looking (i.e., healthy, full of energy, very robust).
Then on Thursday morning, Moses called me from school in tears, telling me that his stomach hurt. I rushed to his school and then to the hospital and he was in tears for most of the ride to the hospital. He was having very painful / explosive diarrhea. Given the amount of pain he was having and the condition of the diarrhea, the ER doctor and his surgeon thought that he might have C. difficile due to the triple antibiotic therapy that he was on last week. He received an ultrasound of his abdomen and they found that internally, he was healing well. They took a stool sample and sent Moses home.
Later that night, Moses experienced intense pain / explosive diarrhea from midnight to 3 am. We brought him back to the ER at that time since Moses was frantic and wanted help medical help. They took a blood sample and determined he was not dehydrated (a good sign), and sent us home with an oral prescription of Vancomycin. (Yes, frustratingly, the medical recommendation for C. difficile, which is caused by an overuse of antibiotics, is yet another strong antibiotic). Moses is, of course, on a good probiotic, but it obviously hasn’t been enough with all of the antibiotics that he has been on.
Since he was in so much distress, we filled the prescription right away (it’s another costly one – $400 for a 2-week dose), but the ER doctor advised that we call his Infectious Diseases Specialist before we started him on it since the results of the stool sample hadn’t come back yet. When I talked to his doctor, she said that we should start him on it, but she would get back to me when the results came in. Later that afternoon, we received the good news — he did not have C. difficile or rotovirus. A huge relief! We didn’t know what he had – was it a a virus or a side effect of the surgery? She advised that if his pain continued, to bring him back to the hospital and to get re-assessed by his surgeon.
Then she said that we could stop the Vancomycin, and also she conceded that we could also stop his prophylactic antibiotic!!!!!!! She didn’t want him taking anything that could potentially make the diarrhea worse. This is a huge answered prayer!!!!!! We also stopped the antifungal (Diflucan) that he’s been on since being on Linezolid (that antibiotic really screwed with his flora).
Today is Saturday, and his last painful bowel movement was 24 hours ago. He had a great sleep last night (slept for 11.5 hours) and is in great spirits today. We even went sliding this afternoon!
So, it was a brutal 36 hours, but I am thrilled about the unexpected blessing – a true answered prayer / miracle!!! I am so happy!!!
I am hoping and praying that Moses’ body just gets stronger and stronger…