So, we haven't gotten internet set up at our house yet, so I'm breaking down and posting this from my phone! So much has happened since our last post. Oakley had to get a helmet, because he favored one side and his head got lop-sided, so as of today, he has to wear a head shaping helmet 23 hours a day for the next 3-4 months!
He's gone back and forth on weight gain, he had a lot of diarrhea starting a few weeks ago, and started vomiting on non-Bactrim days (he is now off Bactrim and on a different med that doesn't make him pukey). They tested his poop to see if he was getting enough or too much of his pancreatic enzymes, and to check for some viruses, and his fecal elastase came back normal-so he no longer needs his enzymes (the bone marrow transplant is starting to make some awesome changes in our little boy)! We also found out that he got Rotavirus, which causes diarrhea and sometimes vomiting. His body seems to be doing ok fighting it on it's own right now, so he's not on steroids or antivirals for it. We pray that he continues to be able to fight it without them.
He has been having times of intolerance on his feeds, and since he's off his TPN (total parental nutrition), we really need him to start accepting his food better. They have him on a constant rate of 40-50 ml's per hour through his NG(nasalgastric)tube. When he's at 50, he starts to vomit sometimes, and since his main goal is to gain weight, we don't want him puking. When he does puke, it looks like he might be aspirating (inhaling) some of it. Long term, this is dangerous, because he will be at risk for pneumonia constantly. To better determine if he is aspirating, they mixed grape juice concentrate with his food. He's on Vivonex formula right now, to try to maintain his triglycerides and help him gain weight. So far, he's done very well, only a miniscule amount has been detected in his trach suctionings.
Trevor got a job at Carpet Barn, and it's slow, but he's doing pretty well there. He does seem to be a sickness magnet though, we've been ill off and on since we've been back.
We have tons to do if we're quarantined from Oakley though. Since February 8th, we've torn out all of our carpets and replaced them with vinyl plank flooring, we've scrubbed all the walls and repainted them, we put Killz down on our subfloor before putting down the planks, we replaced our water heater, had disaster cleanup dry 8" of water from our crawl space, cleared out our storage unit, and had a sewer main line break! We've kind of had our hands full. Luckily, we haven't had to do it alone! My cousins helped lay flooring, my grandparents brought their trailer and helped empty the storage unit, they painted and floored and cleaned, my grandpa and dad loaded up the water heater and installed it, then helped tear out carpet, my parents have been over many weekends helping to floor, patch drywall, pull toilets, unplug lines, and tons more! They even brought a bunch of students from Nampa Christian to help paint and clean up rocks! Trevor's cousins came down and fixed the broken pipe that caused the 8" of water, resecured vent ducts, and found and fixed another leaking pipe we didn't even know about! Our brothers helped tear out linoleum and carpet, and pull up wood floors and particle board that was stapled and glued to the subfloor. Rob and Jenn have helped take stuff to the dump, scrubbed walls, rip out carpet, and lend us their shop vac to finish the job.
We are so happy to be home and surrounded by so many caring family members who've traded their weekends and days off for helping us out.
We should find out Oakley's chimerisms soon, and he'll be 11 months old in just a couple of days, so I promise I'll post again soon!
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