Over this Easter break, I had scheduled a Metabolic Cart and PFT test for Parker as well as a follow-up with his doctor in New Orleans (while he spends the holiday with his mother who live in New Orleans) that way he would not miss more school than he already has this year. She just called me and said that she and Parker left the hospital because they did not call them back after 70 minutes of waiting and the clinic staff did not seem to understand where they were supposed to go. I am kicking myself for assuming that she would follow through on this. Anyway, now that I have vented I will focus on the solution. I am calling his doctor to have him address some paperwork I sent ahead (physican assistance program for supplements for the g-tube) and a letter asking for suggestions for a mixture of calories and powder enzymes to allow for an overnight feeding session without waking Parker up every two hours or so. I need suggestions from you all to see how you do it. I am currently using Scandishakes to get Parker about 3,100 calories a day. He takes 4 Ultrase MT-20s every two hours during a feeding session with the pump. Any suggestions would help with this. My other solution is to make sure that I don't schedule doctor appointments that rely on his mother to follow through. It really aggrivates me to say that but his health and stability with his care is too important to mess it up over a lack of patience. I saw several requests for Easter pictures for everyone. As soon as I get mine I will post one or two because he looked sharp helping his cousins find eggs. This year Parker joined the "adult conspiracy". I hope everyone had a great holiday.
You are using an out of date browser. It may not display this or other websites correctly.
You should upgrade or use an alternative browser.
You should upgrade or use an alternative browser.
Enzyme formula suggestions
- Thread starter jimiv
- Start date
Over this Easter break, I had scheduled a Metabolic Cart and PFT test for Parker as well as a follow-up with his doctor in New Orleans (while he spends the holiday with his mother who live in New Orleans) that way he would not miss more school than he already has this year. She just called me and said that she and Parker left the hospital because they did not call them back after 70 minutes of waiting and the clinic staff did not seem to understand where they were supposed to go. I am kicking myself for assuming that she would follow through on this. Anyway, now that I have vented I will focus on the solution. I am calling his doctor to have him address some paperwork I sent ahead (physican assistance program for supplements for the g-tube) and a letter asking for suggestions for a mixture of calories and powder enzymes to allow for an overnight feeding session without waking Parker up every two hours or so. I need suggestions from you all to see how you do it. I am currently using Scandishakes to get Parker about 3,100 calories a day. He takes 4 Ultrase MT-20s every two hours during a feeding session with the pump. Any suggestions would help with this. My other solution is to make sure that I don't schedule doctor appointments that rely on his mother to follow through. It really aggrivates me to say that but his health and stability with his care is too important to mess it up over a lack of patience. I saw several requests for Easter pictures for everyone. As soon as I get mine I will post one or two because he looked sharp helping his cousins find eggs. This year Parker joined the "adult conspiracy". I hope everyone had a great holiday.
Over this Easter break, I had scheduled a Metabolic Cart and PFT test for Parker as well as a follow-up with his doctor in New Orleans (while he spends the holiday with his mother who live in New Orleans) that way he would not miss more school than he already has this year. She just called me and said that she and Parker left the hospital because they did not call them back after 70 minutes of waiting and the clinic staff did not seem to understand where they were supposed to go. I am kicking myself for assuming that she would follow through on this. Anyway, now that I have vented I will focus on the solution. I am calling his doctor to have him address some paperwork I sent ahead (physican assistance program for supplements for the g-tube) and a letter asking for suggestions for a mixture of calories and powder enzymes to allow for an overnight feeding session without waking Parker up every two hours or so. I need suggestions from you all to see how you do it. I am currently using Scandishakes to get Parker about 3,100 calories a day. He takes 4 Ultrase MT-20s every two hours during a feeding session with the pump. Any suggestions would help with this. My other solution is to make sure that I don't schedule doctor appointments that rely on his mother to follow through. It really aggrivates me to say that but his health and stability with his care is too important to mess it up over a lack of patience. I saw several requests for Easter pictures for everyone. As soon as I get mine I will post one or two because he looked sharp helping his cousins find eggs. This year Parker joined the "adult conspiracy". I hope everyone had a great holiday.
Over this Easter break, I had scheduled a Metabolic Cart and PFT test for Parker as well as a follow-up with his doctor in New Orleans (while he spends the holiday with his mother who live in New Orleans) that way he would not miss more school than he already has this year. She just called me and said that she and Parker left the hospital because they did not call them back after 70 minutes of waiting and the clinic staff did not seem to understand where they were supposed to go. I am kicking myself for assuming that she would follow through on this. Anyway, now that I have vented I will focus on the solution. I am calling his doctor to have him address some paperwork I sent ahead (physican assistance program for supplements for the g-tube) and a letter asking for suggestions for a mixture of calories and powder enzymes to allow for an overnight feeding session without waking Parker up every two hours or so. I need suggestions from you all to see how you do it. I am currently using Scandishakes to get Parker about 3,100 calories a day. He takes 4 Ultrase MT-20s every two hours during a feeding session with the pump. Any suggestions would help with this. My other solution is to make sure that I don't schedule doctor appointments that rely on his mother to follow through. It really aggrivates me to say that but his health and stability with his care is too important to mess it up over a lack of patience. I saw several requests for Easter pictures for everyone. As soon as I get mine I will post one or two because he looked sharp helping his cousins find eggs. This year Parker joined the "adult conspiracy". I hope everyone had a great holiday.
Over this Easter break, I had scheduled a Metabolic Cart and PFT test for Parker as well as a follow-up with his doctor in New Orleans (while he spends the holiday with his mother who live in New Orleans) that way he would not miss more school than he already has this year. She just called me and said that she and Parker left the hospital because they did not call them back after 70 minutes of waiting and the clinic staff did not seem to understand where they were supposed to go. I am kicking myself for assuming that she would follow through on this. Anyway, now that I have vented I will focus on the solution. I am calling his doctor to have him address some paperwork I sent ahead (physican assistance program for supplements for the g-tube) and a letter asking for suggestions for a mixture of calories and powder enzymes to allow for an overnight feeding session without waking Parker up every two hours or so. I need suggestions from you all to see how you do it. I am currently using Scandishakes to get Parker about 3,100 calories a day. He takes 4 Ultrase MT-20s every two hours during a feeding session with the pump. Any suggestions would help with this. My other solution is to make sure that I don't schedule doctor appointments that rely on his mother to follow through. It really aggrivates me to say that but his health and stability with his care is too important to mess it up over a lack of patience. I saw several requests for Easter pictures for everyone. As soon as I get mine I will post one or two because he looked sharp helping his cousins find eggs. This year Parker joined the "adult conspiracy". I hope everyone had a great holiday.
T
Terry
Guest
Jim,
Seems we are in the same boat with the children's mothers. I hope there won't be a charge for walking out of the clinic.
I hope you have some luck with the enzymes. I don't see how you or Parker are getting enough rest.
Good Luck!
Terry
Seems we are in the same boat with the children's mothers. I hope there won't be a charge for walking out of the clinic.
I hope you have some luck with the enzymes. I don't see how you or Parker are getting enough rest.
Good Luck!
Terry
T
Terry
Guest
Jim,
Seems we are in the same boat with the children's mothers. I hope there won't be a charge for walking out of the clinic.
I hope you have some luck with the enzymes. I don't see how you or Parker are getting enough rest.
Good Luck!
Terry
Seems we are in the same boat with the children's mothers. I hope there won't be a charge for walking out of the clinic.
I hope you have some luck with the enzymes. I don't see how you or Parker are getting enough rest.
Good Luck!
Terry
T
Terry
Guest
Jim,
Seems we are in the same boat with the children's mothers. I hope there won't be a charge for walking out of the clinic.
I hope you have some luck with the enzymes. I don't see how you or Parker are getting enough rest.
Good Luck!
Terry
Seems we are in the same boat with the children's mothers. I hope there won't be a charge for walking out of the clinic.
I hope you have some luck with the enzymes. I don't see how you or Parker are getting enough rest.
Good Luck!
Terry
T
Terry
Guest
Jim,
Seems we are in the same boat with the children's mothers. I hope there won't be a charge for walking out of the clinic.
I hope you have some luck with the enzymes. I don't see how you or Parker are getting enough rest.
Good Luck!
Terry
Seems we are in the same boat with the children's mothers. I hope there won't be a charge for walking out of the clinic.
I hope you have some luck with the enzymes. I don't see how you or Parker are getting enough rest.
Good Luck!
Terry
T
Terry
Guest
Jim,
<br />
<br />Seems we are in the same boat with the children's mothers. I hope there won't be a charge for walking out of the clinic.
<br />
<br />I hope you have some luck with the enzymes. I don't see how you or Parker are getting enough rest.
<br />
<br />Good Luck!
<br />Terry
<br />
<br />Seems we are in the same boat with the children's mothers. I hope there won't be a charge for walking out of the clinic.
<br />
<br />I hope you have some luck with the enzymes. I don't see how you or Parker are getting enough rest.
<br />
<br />Good Luck!
<br />Terry
We aren't. I am averaging five or six hours of sleep a night. Our feeding routine starts when I wake him up at 6am and start his breathing treatments. Then for about a half an hour we do a 200-500cc bolus feed for breakfast while he wakes up. He eats lunch at school and has a snack when he gets home. Dinnertime is about 6:30 which is really his one full meal I can sit with him. The hard part comes next, about 7-8 is when we start a pump feed of 1000cc. This takes 3.5-4 hours and he is tied to the pump (no baseball practicing or playing catch) He can read or work on puzzles or lego sets (when his grades improve) watch TV or play on the computer. Most of the time, he goes to sleep early (8-8:30) and I get to wake him up to take his enzymes. At this time I have to remember how I would feel if someone kept waking me up once I would fall asleep (neither of us are morning people) because if I took what he said personally when he is half asleep, he would be grounded for life. Anyhow, I have a baby monitor in his room so if I go to bed before it stops I will hear the alarm sound when it stops (did I mention that neither of us are morning people). We will see what comes next.
We aren't. I am averaging five or six hours of sleep a night. Our feeding routine starts when I wake him up at 6am and start his breathing treatments. Then for about a half an hour we do a 200-500cc bolus feed for breakfast while he wakes up. He eats lunch at school and has a snack when he gets home. Dinnertime is about 6:30 which is really his one full meal I can sit with him. The hard part comes next, about 7-8 is when we start a pump feed of 1000cc. This takes 3.5-4 hours and he is tied to the pump (no baseball practicing or playing catch) He can read or work on puzzles or lego sets (when his grades improve) watch TV or play on the computer. Most of the time, he goes to sleep early (8-8:30) and I get to wake him up to take his enzymes. At this time I have to remember how I would feel if someone kept waking me up once I would fall asleep (neither of us are morning people) because if I took what he said personally when he is half asleep, he would be grounded for life. Anyhow, I have a baby monitor in his room so if I go to bed before it stops I will hear the alarm sound when it stops (did I mention that neither of us are morning people). We will see what comes next.
We aren't. I am averaging five or six hours of sleep a night. Our feeding routine starts when I wake him up at 6am and start his breathing treatments. Then for about a half an hour we do a 200-500cc bolus feed for breakfast while he wakes up. He eats lunch at school and has a snack when he gets home. Dinnertime is about 6:30 which is really his one full meal I can sit with him. The hard part comes next, about 7-8 is when we start a pump feed of 1000cc. This takes 3.5-4 hours and he is tied to the pump (no baseball practicing or playing catch) He can read or work on puzzles or lego sets (when his grades improve) watch TV or play on the computer. Most of the time, he goes to sleep early (8-8:30) and I get to wake him up to take his enzymes. At this time I have to remember how I would feel if someone kept waking me up once I would fall asleep (neither of us are morning people) because if I took what he said personally when he is half asleep, he would be grounded for life. Anyhow, I have a baby monitor in his room so if I go to bed before it stops I will hear the alarm sound when it stops (did I mention that neither of us are morning people). We will see what comes next.
We aren't. I am averaging five or six hours of sleep a night. Our feeding routine starts when I wake him up at 6am and start his breathing treatments. Then for about a half an hour we do a 200-500cc bolus feed for breakfast while he wakes up. He eats lunch at school and has a snack when he gets home. Dinnertime is about 6:30 which is really his one full meal I can sit with him. The hard part comes next, about 7-8 is when we start a pump feed of 1000cc. This takes 3.5-4 hours and he is tied to the pump (no baseball practicing or playing catch) He can read or work on puzzles or lego sets (when his grades improve) watch TV or play on the computer. Most of the time, he goes to sleep early (8-8:30) and I get to wake him up to take his enzymes. At this time I have to remember how I would feel if someone kept waking me up once I would fall asleep (neither of us are morning people) because if I took what he said personally when he is half asleep, he would be grounded for life. Anyhow, I have a baby monitor in his room so if I go to bed before it stops I will hear the alarm sound when it stops (did I mention that neither of us are morning people). We will see what comes next.
We aren't. I am averaging five or six hours of sleep a night. Our feeding routine starts when I wake him up at 6am and start his breathing treatments. Then for about a half an hour we do a 200-500cc bolus feed for breakfast while he wakes up. He eats lunch at school and has a snack when he gets home. Dinnertime is about 6:30 which is really his one full meal I can sit with him. The hard part comes next, about 7-8 is when we start a pump feed of 1000cc. This takes 3.5-4 hours and he is tied to the pump (no baseball practicing or playing catch) He can read or work on puzzles or lego sets (when his grades improve) watch TV or play on the computer. Most of the time, he goes to sleep early (8-8:30) and I get to wake him up to take his enzymes. At this time I have to remember how I would feel if someone kept waking me up once I would fall asleep (neither of us are morning people) because if I took what he said personally when he is half asleep, he would be grounded for life. Anyhow, I have a baby monitor in his room so if I go to bed before it stops I will hear the alarm sound when it stops (did I mention that neither of us are morning people). We will see what comes next.
ConnorsMom
New member
To avoid waking Connor up in the night for enzymes, we spread his feed out over 10 hrs (his normal sleep pattern) we had to play around with it a bit to get the enzymes right, but for us, taking 5 Ultrase MT20's at the beginning of the feed and again at the end of the feed seems to be working. Connor only gains about 1.5-2 lbs a week, but the nutritionist said this last time that he may be gaining too quickly. When I say we had to play around with the enzymes, I mean we started with 4 and watched his bowel movements closely. Our nutritionists seems to be ok with how we are doing it, I'd be intereseted to know what yours suggested. Incidentally, Connor does 4 cans of the 2 Cal HN (475 ml per can) at a rate of 95 mls and hour.
ConnorsMom
New member
To avoid waking Connor up in the night for enzymes, we spread his feed out over 10 hrs (his normal sleep pattern) we had to play around with it a bit to get the enzymes right, but for us, taking 5 Ultrase MT20's at the beginning of the feed and again at the end of the feed seems to be working. Connor only gains about 1.5-2 lbs a week, but the nutritionist said this last time that he may be gaining too quickly. When I say we had to play around with the enzymes, I mean we started with 4 and watched his bowel movements closely. Our nutritionists seems to be ok with how we are doing it, I'd be intereseted to know what yours suggested. Incidentally, Connor does 4 cans of the 2 Cal HN (475 ml per can) at a rate of 95 mls and hour.
ConnorsMom
New member
To avoid waking Connor up in the night for enzymes, we spread his feed out over 10 hrs (his normal sleep pattern) we had to play around with it a bit to get the enzymes right, but for us, taking 5 Ultrase MT20's at the beginning of the feed and again at the end of the feed seems to be working. Connor only gains about 1.5-2 lbs a week, but the nutritionist said this last time that he may be gaining too quickly. When I say we had to play around with the enzymes, I mean we started with 4 and watched his bowel movements closely. Our nutritionists seems to be ok with how we are doing it, I'd be intereseted to know what yours suggested. Incidentally, Connor does 4 cans of the 2 Cal HN (475 ml per can) at a rate of 95 mls and hour.
ConnorsMom
New member
To avoid waking Connor up in the night for enzymes, we spread his feed out over 10 hrs (his normal sleep pattern) we had to play around with it a bit to get the enzymes right, but for us, taking 5 Ultrase MT20's at the beginning of the feed and again at the end of the feed seems to be working. Connor only gains about 1.5-2 lbs a week, but the nutritionist said this last time that he may be gaining too quickly. When I say we had to play around with the enzymes, I mean we started with 4 and watched his bowel movements closely. Our nutritionists seems to be ok with how we are doing it, I'd be intereseted to know what yours suggested. Incidentally, Connor does 4 cans of the 2 Cal HN (475 ml per can) at a rate of 95 mls and hour.
ConnorsMom
New member
To avoid waking Connor up in the night for enzymes, we spread his feed out over 10 hrs (his normal sleep pattern) we had to play around with it a bit to get the enzymes right, but for us, taking 5 Ultrase MT20's at the beginning of the feed and again at the end of the feed seems to be working. Connor only gains about 1.5-2 lbs a week, but the nutritionist said this last time that he may be gaining too quickly. When I say we had to play around with the enzymes, I mean we started with 4 and watched his bowel movements closely. Our nutritionists seems to be ok with how we are doing it, I'd be intereseted to know what yours suggested. Incidentally, Connor does 4 cans of the 2 Cal HN (475 ml per can) at a rate of 95 mls and hour.