Ups and Downs
The celebration over Dad's new diet didn't last long! Over the next day or two, most of his food went straight out the pump, and then the pump quit and Dad wound up vomiting again. Eventually they got the pump fixed, but he was of all nutrition for a couple of days and they haven't been able to get him back on real food yet -- he's still getting only liquid nutrition into his stomach tube (actually into his intestine), at about half the level they'd like to see him get. Right now he says even tiny sips of water from his ice chips make him feel queasy, so it may be a while before his digestive system permits real food again.
I saw Dad this weekend for the first time in three weeks, and for the most part there was a big improvement. He was much more responsive and with it (most of the time) and he was talking, which I hadn't witnessed personally in two months. But yet again everyone told me I should have been here a few days earlier! The day we arrived (Friday) he had chronic hiccups, which continued all through the night, so on Saturday he was exhausted. They did finally give him some medication to stop the hiccups, but that messes up his blood pressure, so they can't give him much, or give it to him very often. He slept through much of our visit Saturday, and he had a hard time keeping himself upright on the inclined bed or keeping his jaw closed (especially when he slept) so he had a very dry mouth. They put him in a chair for a short while on Saturday, and that was extremely difficult for him. All in all, not such a great day.
Sunday was better. He got a good night's sleep on Saturday and his color and posture were better in the morning. The physical therapist came in on Sunday and gave him some exercises to do, starting with his toes and working his way up to his head. Mom learned the routine so she could help him with these -- he's supposed to do them hourly when she's there. Unfortunately they did tend to send his pulse skyrocketing, so they couldn't do as many of the exercise sets as the PT recommended. But by only the third set he was acting stronger, so if we can keep him going with therapy things are bound to get better quickly. I didn't see Dad today, but Mom said the weekday PT came in and had him sitting on the side of the bed, and that despite a bad night (the respiratory tech didn't show up to suction him!!! so he got very little rest) he was having a good day.
Dad is back on antibiotics. His C. diff. has returned, and he has developed a urinary tract infection, which wouldn't be any fun for a healthy person and is probably making him even more miserable. His antibiotics are given to him via IV for now, since his stomach is still unpredictable. Rehab centers won't want to take him until he can get them in his food, so this could cause yet another delay.
Dad looks very, very thin -- it's especially noticeable in his legs, which are mere sticks, but his arms aren't a whole lot better. We don't know what he weighs now, but we fear that after a couple of days with no nutrition whatsover last week, he's even thinner than before. We asked his nurse on Saturday, who first told us that he'd been weighed that morning, but when she tried to track down the number she told us they hadn't gotten the weight that day, and she couldn't even tell when the last time he was weighed was! Dad's nurse that day was very nice and professional but not at all forthcoming with useful information -- and she balked when we tried to get her to move Dad back into the chair, claiming he was too weak (and just how is he supposed to get stronger, unless they're willing to make an effort for him??).
I came away from this weekend visit more frustrated than ever with the hospital. I remain extremely impressed with their cardiac care, but for whole-person care they are sorely lacking. There is a total lack of oversight -- we get the sense that no one is looking at the whole picture, and they don't seem to realize that a small amount of neglect (like Dad not being suctioned, or them missing one dose of his medicine) can set him back days. Dad's cardiologist is at bat for him and comes by far more often than she is required to, particularly given that his main problems now aren't related to his heart, but the GI doctors, for example, seem to disappear for days, and don't know the whole story when they do show up. Mom is hoping to have a meeting with all his doctors simultaneously so they can get their act together in terms of a plan of recovery and a prognosis, but she will have to raise Cain to do it, I suspect!
Mom and I went by Stella Maris again this weekend to see their rehab facility (Sarah, the professional questioner, tried to come along, but they didn't have anyone to give us a tour at the time she could be there, so Mom and I were left to fend for ourselves at tour time). Their weekend admissions person wasn't particularly well-informed about their rehab (they've just completed renovating their facility, and she didn't know that they'd moved out of their temporary quarters already) but she was friendly and answered our questions as best she could. The facility was adequate, if not overwhelmingly impressive; Mom later told Dad that objectively she prefers Brightwood, but Stella Maris is more convenient and has the advantage of being Catholic, so she's torn. We are still being optimistic that he'll be ready for rehab in another week or two, but at the rate things are going some days, it could be months yet. Sigh.
I saw Dad this weekend for the first time in three weeks, and for the most part there was a big improvement. He was much more responsive and with it (most of the time) and he was talking, which I hadn't witnessed personally in two months. But yet again everyone told me I should have been here a few days earlier! The day we arrived (Friday) he had chronic hiccups, which continued all through the night, so on Saturday he was exhausted. They did finally give him some medication to stop the hiccups, but that messes up his blood pressure, so they can't give him much, or give it to him very often. He slept through much of our visit Saturday, and he had a hard time keeping himself upright on the inclined bed or keeping his jaw closed (especially when he slept) so he had a very dry mouth. They put him in a chair for a short while on Saturday, and that was extremely difficult for him. All in all, not such a great day.
Sunday was better. He got a good night's sleep on Saturday and his color and posture were better in the morning. The physical therapist came in on Sunday and gave him some exercises to do, starting with his toes and working his way up to his head. Mom learned the routine so she could help him with these -- he's supposed to do them hourly when she's there. Unfortunately they did tend to send his pulse skyrocketing, so they couldn't do as many of the exercise sets as the PT recommended. But by only the third set he was acting stronger, so if we can keep him going with therapy things are bound to get better quickly. I didn't see Dad today, but Mom said the weekday PT came in and had him sitting on the side of the bed, and that despite a bad night (the respiratory tech didn't show up to suction him!!! so he got very little rest) he was having a good day.
Dad is back on antibiotics. His C. diff. has returned, and he has developed a urinary tract infection, which wouldn't be any fun for a healthy person and is probably making him even more miserable. His antibiotics are given to him via IV for now, since his stomach is still unpredictable. Rehab centers won't want to take him until he can get them in his food, so this could cause yet another delay.
Dad looks very, very thin -- it's especially noticeable in his legs, which are mere sticks, but his arms aren't a whole lot better. We don't know what he weighs now, but we fear that after a couple of days with no nutrition whatsover last week, he's even thinner than before. We asked his nurse on Saturday, who first told us that he'd been weighed that morning, but when she tried to track down the number she told us they hadn't gotten the weight that day, and she couldn't even tell when the last time he was weighed was! Dad's nurse that day was very nice and professional but not at all forthcoming with useful information -- and she balked when we tried to get her to move Dad back into the chair, claiming he was too weak (and just how is he supposed to get stronger, unless they're willing to make an effort for him??).
I came away from this weekend visit more frustrated than ever with the hospital. I remain extremely impressed with their cardiac care, but for whole-person care they are sorely lacking. There is a total lack of oversight -- we get the sense that no one is looking at the whole picture, and they don't seem to realize that a small amount of neglect (like Dad not being suctioned, or them missing one dose of his medicine) can set him back days. Dad's cardiologist is at bat for him and comes by far more often than she is required to, particularly given that his main problems now aren't related to his heart, but the GI doctors, for example, seem to disappear for days, and don't know the whole story when they do show up. Mom is hoping to have a meeting with all his doctors simultaneously so they can get their act together in terms of a plan of recovery and a prognosis, but she will have to raise Cain to do it, I suspect!
Mom and I went by Stella Maris again this weekend to see their rehab facility (Sarah, the professional questioner, tried to come along, but they didn't have anyone to give us a tour at the time she could be there, so Mom and I were left to fend for ourselves at tour time). Their weekend admissions person wasn't particularly well-informed about their rehab (they've just completed renovating their facility, and she didn't know that they'd moved out of their temporary quarters already) but she was friendly and answered our questions as best she could. The facility was adequate, if not overwhelmingly impressive; Mom later told Dad that objectively she prefers Brightwood, but Stella Maris is more convenient and has the advantage of being Catholic, so she's torn. We are still being optimistic that he'll be ready for rehab in another week or two, but at the rate things are going some days, it could be months yet. Sigh.
posted by Emily @ 4:54 PM
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