Day +41
WBC 5.5
What a day, what a stressful day. But a good day too. Max is fairly stable off the vent. In fact, now, it's after midnight and it's the best he's saturated all day. Way to go Max! The stress comes from the desire to fairly quickly transition us out of a one-to-one room situation. We've had a nurse full-time in Max's room for 3 weeks now and while it's a sign of progress to return to the general fold, it's a little scary. Max was reintubated within 48 hours the first time and we had hoped to keep this personal attention for at least that long. Mostly we're afraid of being too sleepy at night to hear one of Max's alarms. We're just going to have to make sure that the nurses stay vigilant with our little guy.
As for the diapers, well, they're still very bloody. Last night Margaret was around for the worst one yet -- bright red blood spilling out onto the sheets. Today's sign of progress is that the stool (can we even still call it that?) is a little darker, and maybe more "clotty" But tonight we still had a nasty one to contend with. Sorry to be so graphic, but that's the way it is. When one of these bad boys is brewing, Max's saturations drop, his belly convulses, his face grimaces, and he needs help with pain meds. However, we've got a doctor now that still remains unimpressed with Max's diapers. He is confident the new doses of steroids are going to work. But he asking us to be patient as it will take a few days to see effects.
The bloody stool and the newly freed up airway are the lingering concerns for Max. He is engrafted, his white blood cells and neutrophils are climbing, and overall clinically he is doing very well. We are very stressed from worry and lack of sleep. We have been impressed with the care we have received at every step of the way here in Minnesota, but at the same time we have been surprised by just how exhausting it can be to be so involved with the care. But we know that we are the best advocates for Max and at his age we have to be his voice. Of course, now that he's off the vent, we can hear his real voice, so frail and tired, coming back to us from days not long ago.
He's still very sleepy from the sedation he needs. He's not strong enough to hold his head up or to roll over or anything like that. But his eyes are open a lot more and he's been able to watch his movies. I keep telling him, "You're awake! What a nap! What did you dream about?" And I feel like he's saying back, "Mozart . . . puppets . . .Bach . . . Chicken with Chicken Gravy . . . animals . . . and Julie Clark, always Julie Clark."
Temperatures dropping rapidly up here: the coats are on, the hoods are up.
--mike
What a day, what a stressful day. But a good day too. Max is fairly stable off the vent. In fact, now, it's after midnight and it's the best he's saturated all day. Way to go Max! The stress comes from the desire to fairly quickly transition us out of a one-to-one room situation. We've had a nurse full-time in Max's room for 3 weeks now and while it's a sign of progress to return to the general fold, it's a little scary. Max was reintubated within 48 hours the first time and we had hoped to keep this personal attention for at least that long. Mostly we're afraid of being too sleepy at night to hear one of Max's alarms. We're just going to have to make sure that the nurses stay vigilant with our little guy.
As for the diapers, well, they're still very bloody. Last night Margaret was around for the worst one yet -- bright red blood spilling out onto the sheets. Today's sign of progress is that the stool (can we even still call it that?) is a little darker, and maybe more "clotty" But tonight we still had a nasty one to contend with. Sorry to be so graphic, but that's the way it is. When one of these bad boys is brewing, Max's saturations drop, his belly convulses, his face grimaces, and he needs help with pain meds. However, we've got a doctor now that still remains unimpressed with Max's diapers. He is confident the new doses of steroids are going to work. But he asking us to be patient as it will take a few days to see effects.
The bloody stool and the newly freed up airway are the lingering concerns for Max. He is engrafted, his white blood cells and neutrophils are climbing, and overall clinically he is doing very well. We are very stressed from worry and lack of sleep. We have been impressed with the care we have received at every step of the way here in Minnesota, but at the same time we have been surprised by just how exhausting it can be to be so involved with the care. But we know that we are the best advocates for Max and at his age we have to be his voice. Of course, now that he's off the vent, we can hear his real voice, so frail and tired, coming back to us from days not long ago.
He's still very sleepy from the sedation he needs. He's not strong enough to hold his head up or to roll over or anything like that. But his eyes are open a lot more and he's been able to watch his movies. I keep telling him, "You're awake! What a nap! What did you dream about?" And I feel like he's saying back, "Mozart . . . puppets . . .Bach . . . Chicken with Chicken Gravy . . . animals . . . and Julie Clark, always Julie Clark."
Temperatures dropping rapidly up here: the coats are on, the hoods are up.
--mike
posted by Mike Ciacciarelli
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