It's been a while since our last update. To sum up, we've had some slight delays, but we're getting mostly back on track. And now for more details...
John-Raven gave us some extra work to do for a while. He picked up something that knocked his oxygen saturation levels down and required a "short" visit to the Emergency Department at Cook Children's, which revealed the start of pneumonia in one of his lungs. He didn't have to be admitted to the hospital, and we treated him with the usual barrage of steroids, antibiotics, and breathing treatments, and although it took him a few weeks to get back to baseline, he eventually got there in time for the beginning of summer school. Other than that, he's been doing fairly well.
William was on a fairly clear path toward home (after our requisite rooming-in sessions, which are necessary for families with kids who have new trachs) which would have put us headed home soon, but he started running a fever last Friday. His fevers would come and go, mostly arriving mid-day and dissipating by day's end. None of the tests came back with anything, so we weren't (and aren't) sure what caused the fevers, but they set our discharge back by probably a week or so. His trach culture did test positive for MRSA yesterday. We don't have any evidence to suggest that's been the cause of the fevers, but it's being treated nonetheless. Other than his fevers, which cause him to sleep a lot more than normal, he's been in good spirits and is almost back to where he was at the end of last week.
Amanda and I have completed our trach training and our CPR training, and we even got to be the first to try out an emergency simulation program that the Transitional Care Unit is planning to roll out to parents. (It's basically what they already use to train nurses, and they're going to begin using it to train parents, too. It involves a "dummy" child that actually has a trach, can cough, turns blue when not breathing, can be given CPR and breathing treatments, and generally provides some real-world simulations of problems a trached child might have at home.) All that's left for us is to do our rooming-in, which we should be able to do once William is completely off the vent and only requires an amount of oxygen that is easily sustainable with our home equipment.
John-Raven gave us some extra work to do for a while. He picked up something that knocked his oxygen saturation levels down and required a "short" visit to the Emergency Department at Cook Children's, which revealed the start of pneumonia in one of his lungs. He didn't have to be admitted to the hospital, and we treated him with the usual barrage of steroids, antibiotics, and breathing treatments, and although it took him a few weeks to get back to baseline, he eventually got there in time for the beginning of summer school. Other than that, he's been doing fairly well.
William was on a fairly clear path toward home (after our requisite rooming-in sessions, which are necessary for families with kids who have new trachs) which would have put us headed home soon, but he started running a fever last Friday. His fevers would come and go, mostly arriving mid-day and dissipating by day's end. None of the tests came back with anything, so we weren't (and aren't) sure what caused the fevers, but they set our discharge back by probably a week or so. His trach culture did test positive for MRSA yesterday. We don't have any evidence to suggest that's been the cause of the fevers, but it's being treated nonetheless. Other than his fevers, which cause him to sleep a lot more than normal, he's been in good spirits and is almost back to where he was at the end of last week.
Amanda and I have completed our trach training and our CPR training, and we even got to be the first to try out an emergency simulation program that the Transitional Care Unit is planning to roll out to parents. (It's basically what they already use to train nurses, and they're going to begin using it to train parents, too. It involves a "dummy" child that actually has a trach, can cough, turns blue when not breathing, can be given CPR and breathing treatments, and generally provides some real-world simulations of problems a trached child might have at home.) All that's left for us is to do our rooming-in, which we should be able to do once William is completely off the vent and only requires an amount of oxygen that is easily sustainable with our home equipment.
