Home is good, but wow has it been busy! We finally got mostly settled down after the hospital stay over the weekend of September 6th to 7th. Michael made the run to St. Pete (thank you Terry for the lift) the Saturday night after the admission. By the end of Sunday that weekend, we had made a decent dent in the laundry and dishes (they always seem to collect, even when we arent home). Greg saw his oncologist on Monday the 8th. He was doing pretty well at that point after having had 3 days of IV antibiotics over the weekend (Fri/Sat/Sun evenings). She was pretty happy with his status, but he still had some signs of infection. He was sent home with a script for liquid ciprofloxacin. Good in theory, but known to be bad in practice. This antibiotic in liquid form is known to close J (and even G) tubes. So, a couple of calls back to the doc’s office, as we got him switched to the pill form (crushable and goes in just fine). By Tuesday, he had been off the IV antibiotic for about 36 hours. Infection started to come back even with the ciprofloxacin (mild fever, etc.). Called his oncologist. She wanted another culture from his port (to make sure he doesnt have a blood infection). With the time of day, etc., we ended up going to his primary doc to get the blood drawn for the culture. Once again, they wanted to admit him, but they yielded to the oncologist as we promised to catch up Wednesday. Oncologist also called in another day of the IV antibiotic that day. Wednesday rolled around and Greg went to see his oncologist again before his MRI. IV antibiotics were extended by 10 days (15 doses total including the 1 at the hospital, 3 at home after, and the 1 from Tuesday). The MRI was shortened from brain w/w/o contrast + spine to just brain w/w/o contrast so that he wasnt laying down that long due to concerns about junk getting in his lungs. Thursday was the first day of school for Greg. He did a math assessment and passed with flying colors. He also got his First in Math user ID. The First in Math user ID might be a problem. He has stopped doing pretty much anything else and just wants to do First in Math. :) He is competing with Bradley. Greg is doing so much First in Math that he is hardly even reading now. Hopefully, the novelty will wear down some and we’ll come to a reasonable balance soon. By Friday or so, Greg was doing much better. No fevers at all since Wednesday evening. Energy level came back nicely. Friday night was rough on mom and dad. Greg’s nurse called out sick. We don’t fault her for getting stick, but we would really appreciate it if the nursing company had enough staff assigned to the case someone calling out sick didn’t pretty much always means that we are on our own. With no coverage Friday night, Karen and Michael where pretty beat for the weekend. We stayed around the house. The kids played some games, we worked on random things around the house, etc. We didnt manage to get the trailer home (to clean and put up for sale), but we are getting closer. Hopefully, this coming week. Greg saw his oncologist again Monday. The cyst is almost completely gone! The tumor itself shrunk at least a noticeable amount. This is REALLY good to hear and is just downright exciting news. I could be mistaken, but I believe I remember hearing that we shouldnt expect much change until later into the chemo cycles. Once again, Greg is not the normal case. :) Today, Greg got to go see his amazing dentist. His dentist is so amazing because he specializes in special needs patients (most dentists will not see children on vents). Beyond that, he actually had a trach himself when he was younger. That personal experience goes a long way in understanding what a patient is going through. Greg’s teeth are in great shape. Thank a bunch to his nurses for doing a great job of keeping up with his oral care. Today was also Greg’s second day of school. He has now completed his science assessment and passed with flying colors. Towards the end of his lesson, he was looking at “Disgusting Science”. I see messy experiments in our future. :)
Posted on: Wed, 17 Sep 2014 00:20:38 +0000
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