We were asked if we would be willing to write a little bit on what life is like with a child on TPN and share it with Boston Children's Hospital for posting on their blog site. The hospital has an editor who worked with us in drafting the piece, and we are happy with how it came out. It was hard to focus just on the TPN aspect of Peter's care at Children's and there were many drafts trying to tease that out. It was difficult keeping a brief list of those who have helped Peter over the years. There are so many great nurses and doctors at the hospital and we are incredibly grateful for the care Peter has received. In the end, we did focus on the CAIR team since the piece is really about Peter's TPN.
Dr. Raphael, who is the Director of the home parenteral nutrition (TPN) team, thought that it would be helpful for parents who are new to TPN to have a glimpse at another family who has a child on TPN. I don't know if this will accomplish that goal, but know that I would have liked finding something like it when we first started Peter on TPN.
Anyway, here is the blog URL: http://childrenshospitalblog.org/a-labor-of-love-life-with-total-parenteral-nutrition/. The title was chosen by the editor. TPN is labor-intensive, yes... but we all have labor-intensive things we do for our children or other family members, healthy or otherwise.
Wednesday, May 23, 2012
TPN back down to 5 nights per week
Peter is down to 5 nights of TPN again as of the beginning of last week. He holds on to sodium and fluid, particularly when given in IV form. After looking at his intake and output and how much fluid he has been retaining lately, Dr. Kamin gave us the green light to cut back on it since he has regained all of the weight he lost last month, and then some. So far, Peter is holding his weight well with the loss of two nights of IV intake.
As nice as it is for me to be free of preparing and dealing with TPN two nights a week, the excitement for Peter is even greater. He seems to feel rewarded for all of the effort he has been putting into eating. When we had to put him back on TPN after being free of it for almost a month, he was disappointed. I think the disappointment went beyond just having to be tethered to IV tubing. He had been drinking all of the formula, even when he did not want to, and then found out that all of that hard work had not accomplished the goal of staying off TPN. It was a bit defeating.
Peter is still loving the real foods approach to getting off TPN. He is drinking 330 ml of Lactaid daily, eats Greek yogurt twice a day with pureed baby fruit, and then pureed meat and vegetable for dinner. The rest of the day he eats as he wishes (keeping low sodium in mind, as well as the need to watch whether the food agrees with his ileostomy and doesn't send his output up too high). He is still on a big kick with fruits and vegetables, admiring them, talking about them, and thinking about what they might tasted like. It is a hoot taking him to the grocery store where he just can't get enough of the produce aisle. Fortunately, he is eating small enough portions of fruit that his ostomy has not been affected. He is busy planning out our garden these days and thinks that he'll take the wagon out there and use it to haul in what we grow. Hopefully we have a good growing year.
Peter's overnight formula has been going well also. He is up to 530 of Pediasure Peptide (plain flavor so osmolarity is low) and we are now adding 2 Tbsp of Duocal to bump up calories without more fluid or sodium.
Now, if he can just stay in this spot until we get to Boston, then we can verify (hopefully) whether he has gained real weight or if it has all been fluid. He is definitely not gaunt as he was last month when he had such high diarrhea losses, so we are hopeful that most of this is real weight.
One last note, Peter got the OK to start eating peanuts and nuts. His brother is allergic to peanut, so we have avoided giving peanut and any nuts to Peter hoping that postponing them would help avoid an allergy, as well as not knowing how an allergic reaction would fare on him. He has been hospitalized with two allergic reactions to flagyl, so the concern about reaction did have real merit. Anyway, he was tested for allergies to peanut and tree nuts, and he is safe to eat them. He LOVES peanut butter now that he has tasted it and insists that he must have it. Hopefully this does not go the way that the alphabet noodles did and end up just sitting uneaten in the cabinet after the first couple of days of eating it. Peter has declared that he does not like anything out of the "cereal, pasta, and bread group." Funny child!
As nice as it is for me to be free of preparing and dealing with TPN two nights a week, the excitement for Peter is even greater. He seems to feel rewarded for all of the effort he has been putting into eating. When we had to put him back on TPN after being free of it for almost a month, he was disappointed. I think the disappointment went beyond just having to be tethered to IV tubing. He had been drinking all of the formula, even when he did not want to, and then found out that all of that hard work had not accomplished the goal of staying off TPN. It was a bit defeating.
Peter is still loving the real foods approach to getting off TPN. He is drinking 330 ml of Lactaid daily, eats Greek yogurt twice a day with pureed baby fruit, and then pureed meat and vegetable for dinner. The rest of the day he eats as he wishes (keeping low sodium in mind, as well as the need to watch whether the food agrees with his ileostomy and doesn't send his output up too high). He is still on a big kick with fruits and vegetables, admiring them, talking about them, and thinking about what they might tasted like. It is a hoot taking him to the grocery store where he just can't get enough of the produce aisle. Fortunately, he is eating small enough portions of fruit that his ostomy has not been affected. He is busy planning out our garden these days and thinks that he'll take the wagon out there and use it to haul in what we grow. Hopefully we have a good growing year.
Peter's overnight formula has been going well also. He is up to 530 of Pediasure Peptide (plain flavor so osmolarity is low) and we are now adding 2 Tbsp of Duocal to bump up calories without more fluid or sodium.
Now, if he can just stay in this spot until we get to Boston, then we can verify (hopefully) whether he has gained real weight or if it has all been fluid. He is definitely not gaunt as he was last month when he had such high diarrhea losses, so we are hopeful that most of this is real weight.
One last note, Peter got the OK to start eating peanuts and nuts. His brother is allergic to peanut, so we have avoided giving peanut and any nuts to Peter hoping that postponing them would help avoid an allergy, as well as not knowing how an allergic reaction would fare on him. He has been hospitalized with two allergic reactions to flagyl, so the concern about reaction did have real merit. Anyway, he was tested for allergies to peanut and tree nuts, and he is safe to eat them. He LOVES peanut butter now that he has tasted it and insists that he must have it. Hopefully this does not go the way that the alphabet noodles did and end up just sitting uneaten in the cabinet after the first couple of days of eating it. Peter has declared that he does not like anything out of the "cereal, pasta, and bread group." Funny child!
Friday, April 27, 2012
April's check-up
Peter just had another check-up in Boston. With a little over a pound of weight gain since the last visit six weeks ago, and a consistent increase in food intake, we had been excitedly anticipating a decrease in TPN. Then six days before our visit he developed an episode of high ostomy output which lasted four days and resulted in a weight loss of three pounds, even with IV fluid replacements. Throughout it all, Peter acted well, although he was frustrated that he was very limited in what he was allowed to eat as we tried to use dietary management to get the diarrhea to stop.
We think it was a GI bug, as two of his siblings have had subsequent GI distress, but neither of them had symptoms to this degree. With his possible short-gut and with a high ileostomy, it would be expected for Peter to have greater response to a GI bug though. As his ostomy is back to normal now, we will resume feeds as before and hopefully see the weight gain again.
What concerned the CAIR team that there may be more to this situation though, is that Peter’s BMI measurements indicate that he has had long term weight loss, and that his weight gain since the last CAIR visit may be only fluid gain, not real weight. There is a remote chance that the diarrhea really profoundly affected him, and that is what we are actually seeing with the BMI measurements, but since it is so hard to tell, the plan is to come back in another month to check up on him again. (And I used to think that going there every two months was often!) Meanwhile, we will give Peter a little bit MORE TPN, instead of the decrease we had been anticipating a week ago, to help him avoid nutritional deficiencies if he is not really aborbing all he is taking in enterally. If he puts on weight quickly, then we can likely cut back on the TPN again and chalk up the weight loss to the diarrhea, but no one (including us) wants to see him get any more gaunt than he is at this point.
Peter has demonstrated great health resilience in the past, and he continues to do that now, never slowing down through the weight loss. We are glad that he feels good, but it confounds the situation as to how seriously to take his weight loss. As such, even though the monthly travel is stressful, we agree it makes sense to return again in a month and reassess how he is doing at that time.
We think it was a GI bug, as two of his siblings have had subsequent GI distress, but neither of them had symptoms to this degree. With his possible short-gut and with a high ileostomy, it would be expected for Peter to have greater response to a GI bug though. As his ostomy is back to normal now, we will resume feeds as before and hopefully see the weight gain again.
What concerned the CAIR team that there may be more to this situation though, is that Peter’s BMI measurements indicate that he has had long term weight loss, and that his weight gain since the last CAIR visit may be only fluid gain, not real weight. There is a remote chance that the diarrhea really profoundly affected him, and that is what we are actually seeing with the BMI measurements, but since it is so hard to tell, the plan is to come back in another month to check up on him again. (And I used to think that going there every two months was often!) Meanwhile, we will give Peter a little bit MORE TPN, instead of the decrease we had been anticipating a week ago, to help him avoid nutritional deficiencies if he is not really aborbing all he is taking in enterally. If he puts on weight quickly, then we can likely cut back on the TPN again and chalk up the weight loss to the diarrhea, but no one (including us) wants to see him get any more gaunt than he is at this point.
Peter has demonstrated great health resilience in the past, and he continues to do that now, never slowing down through the weight loss. We are glad that he feels good, but it confounds the situation as to how seriously to take his weight loss. As such, even though the monthly travel is stressful, we agree it makes sense to return again in a month and reassess how he is doing at that time.
Saturday, March 17, 2012
March CAIR visit in Boston
Back home again after a "routine check-up" in Boston. We are looking forward to spacing the trips further apart, but not sure when that will happen. We had been going there every two months for visits, but last year went there nine times. It is only March and we've been there twice this year already, with plans to return next month as well for another check-up.
Peter has been doing well with a diet of real food during the day and unflavored formula overnight. He has not gained enough weight or muscle mass to come off a night of TPN yet though. He is down to 400 ml seven nights a week, which is down from the 750 ml that he had been put on after our last trip to Boston.
While we were in Boston, we had some spare time before his appointment so we went to Trader Joe's and found a few fun things for Peter that were low in sodium. (Thanks for your suggestion to look there, Colleen!) They make a very flavorful tortilla chip that Peter fell in love with, called Veggie and Flaxseed Tortilla Chips. He has eaten half a 12 ounce bag in two days! He really craves flavor and there are three distinctly different chip flavors in the bag. They have a long list of low-sodium products that they carry, which will be fun to explore. Unfortunately, many of Trader Joe's products state that they may contain peanuts or be processed in a facility that uses nuts/peanuts, so we need to avoid them until we talk with an allergist about whether Peter can have nuts/peanuts, since he has a brother with peanut allergy. But the chips were a great find. We picked up some Falafel Chips to try as well, no peanut/tree nut warnings there either. The plan between this visit and the next is to keep advancing nighttime feeds and try to get some more fat in during the day. Dr. Kamin told us about whole milk Greek yogurt. We have been using Chobani, which has lots of protein and Peter loves, but the highest fat yogurt they make is 2%, and usually we can only find 0%. He only eats the plain flavor because, like the formula, when sugar is added the osmolality goes up and so can the ostomy output. Even without an ostomy, people with short bowel syndrome often need to watch their sugars to keep stooling down. We found some whole milk Greek yogurt yesterday, with fat content of 15%! It looks like sour cream and is very rich. Peter felt full faster, but we'll keep working with it to see if that might add some more calories. He doesn't like to eat butter, but we are going to try to sneak that into his Gerber purees. He always adds spices to them anyway, so it should be easy to get the butter in without his detection. If we get a "clear" for trying peanut butter, that might give some healthy fat too. He does drink whole-milk Lactaid. (Yes, he eats yogurt, but the team in Boston had awhile ago recommended Lactaid instead of milk, so we've still got him on that so we don't have to re-examine whether it is milk causing a problem with motility.) He does not like avocados and gets tired of eggs after just a bite or two, but they would be good options for quality fat too. Well, enough about food.
Of interest, images of Peter's liver circulation over the last several months seem to show that his portal vein clot is no longer there and that there is some blood flow through the portal vein. Dr. Kamin indicated that this would be expected after time, but that if we looked right up on the portal vein, it would still appear different from a normal portal vein, perhaps scarred and with some reduced flow. I did not realize that the vein would reopen, just thought collateral veins would develop in the belly to overcome the loss of portal vein flow. Peter still has medusa-like veins on his belly, prominent and tortuous, but the hope has always been that with time and growth he would outgrow some of the portal hypertension. There is likely a liver componenent to the portal hypertension as well, so that makes understanding the cause and detemining a solution difficult. There has been discussion many times as to whether a shunt would help reduce the portal hypertension, redirecting the blood flow so that there is just less pressure. The overriding thoughts of all doctors involved is that a shunt would not be good in Peter's case, as it could end up reducing necessary blood flow to the liver. To hear that the portal vein does appear to have flow makes me even more optimistic that the portal pressure will continue to resolve over time, as we have all hoped.
Peter has been doing well with a diet of real food during the day and unflavored formula overnight. He has not gained enough weight or muscle mass to come off a night of TPN yet though. He is down to 400 ml seven nights a week, which is down from the 750 ml that he had been put on after our last trip to Boston.
While we were in Boston, we had some spare time before his appointment so we went to Trader Joe's and found a few fun things for Peter that were low in sodium. (Thanks for your suggestion to look there, Colleen!) They make a very flavorful tortilla chip that Peter fell in love with, called Veggie and Flaxseed Tortilla Chips. He has eaten half a 12 ounce bag in two days! He really craves flavor and there are three distinctly different chip flavors in the bag. They have a long list of low-sodium products that they carry, which will be fun to explore. Unfortunately, many of Trader Joe's products state that they may contain peanuts or be processed in a facility that uses nuts/peanuts, so we need to avoid them until we talk with an allergist about whether Peter can have nuts/peanuts, since he has a brother with peanut allergy. But the chips were a great find. We picked up some Falafel Chips to try as well, no peanut/tree nut warnings there either. The plan between this visit and the next is to keep advancing nighttime feeds and try to get some more fat in during the day. Dr. Kamin told us about whole milk Greek yogurt. We have been using Chobani, which has lots of protein and Peter loves, but the highest fat yogurt they make is 2%, and usually we can only find 0%. He only eats the plain flavor because, like the formula, when sugar is added the osmolality goes up and so can the ostomy output. Even without an ostomy, people with short bowel syndrome often need to watch their sugars to keep stooling down. We found some whole milk Greek yogurt yesterday, with fat content of 15%! It looks like sour cream and is very rich. Peter felt full faster, but we'll keep working with it to see if that might add some more calories. He doesn't like to eat butter, but we are going to try to sneak that into his Gerber purees. He always adds spices to them anyway, so it should be easy to get the butter in without his detection. If we get a "clear" for trying peanut butter, that might give some healthy fat too. He does drink whole-milk Lactaid. (Yes, he eats yogurt, but the team in Boston had awhile ago recommended Lactaid instead of milk, so we've still got him on that so we don't have to re-examine whether it is milk causing a problem with motility.) He does not like avocados and gets tired of eggs after just a bite or two, but they would be good options for quality fat too. Well, enough about food.
Of interest, images of Peter's liver circulation over the last several months seem to show that his portal vein clot is no longer there and that there is some blood flow through the portal vein. Dr. Kamin indicated that this would be expected after time, but that if we looked right up on the portal vein, it would still appear different from a normal portal vein, perhaps scarred and with some reduced flow. I did not realize that the vein would reopen, just thought collateral veins would develop in the belly to overcome the loss of portal vein flow. Peter still has medusa-like veins on his belly, prominent and tortuous, but the hope has always been that with time and growth he would outgrow some of the portal hypertension. There is likely a liver componenent to the portal hypertension as well, so that makes understanding the cause and detemining a solution difficult. There has been discussion many times as to whether a shunt would help reduce the portal hypertension, redirecting the blood flow so that there is just less pressure. The overriding thoughts of all doctors involved is that a shunt would not be good in Peter's case, as it could end up reducing necessary blood flow to the liver. To hear that the portal vein does appear to have flow makes me even more optimistic that the portal pressure will continue to resolve over time, as we have all hoped.
Sunday, March 4, 2012
Lowering the salt and raising the formula.
Peter has done well with the resumed nighttime feed,s and so far has tolerated 20ml/hr, 25ml/hr, and is now at 30ml/hr. We will be talking with the Boston team in another day about taking off one night of TPN.
The sodium issue has been a bit consuming. There is sodium in almost everything, as I said in the last post. Foods that don't seem salty have surprisingly much salt in them. We have found that almost every dry cereal has quite a bit. There is a good cereal that has only 80 mg sodium though: Heart to Heart oat cereal in warm cinnamon flavor. We have come across a few other good products lower in sodium. I am settling for 100mg sodium per serving at the most, but less is much better, as his servings have been getting bigger as he is getting better at eating. There is a type of Wheat Thin called "Hint of Salt" with only 55 mg sodium per serving. Some good cookie choices have been California Lemon Cookies by Back to Nature and Barnum's Animal Crackers. Peter really wants flavor, so the lemon cookies have been a great treat for him. I thought ginger cookies would be super, but so far can't find any with low sodium content.
We've been working on getting him to eat more non-processed foods as well. He has been enjoying alphabet noodles (no added salt), which is a big step considering that regular noodles really put him off. He has also been having fun trying different types of apples. He ended up not liking the turnip, but did try it at least. Homemade pancakes were only interesting for two days. The difficulty with the non-processed foods is that it often takes him an hour to eat an ounce or two of them. He can eat purees and cracker-types of foods much easier and more quickly. Chris decided to make Peter some crackers yesterday, and Peter added garlic powder instead of salt, and Peter enjoyed them, so this may be another way to lower his salt intake. Once we can start shaving off nights of TPN, that will also help reduce his sodium intake.
The sodium issue has been a bit consuming. There is sodium in almost everything, as I said in the last post. Foods that don't seem salty have surprisingly much salt in them. We have found that almost every dry cereal has quite a bit. There is a good cereal that has only 80 mg sodium though: Heart to Heart oat cereal in warm cinnamon flavor. We have come across a few other good products lower in sodium. I am settling for 100mg sodium per serving at the most, but less is much better, as his servings have been getting bigger as he is getting better at eating. There is a type of Wheat Thin called "Hint of Salt" with only 55 mg sodium per serving. Some good cookie choices have been California Lemon Cookies by Back to Nature and Barnum's Animal Crackers. Peter really wants flavor, so the lemon cookies have been a great treat for him. I thought ginger cookies would be super, but so far can't find any with low sodium content.
We've been working on getting him to eat more non-processed foods as well. He has been enjoying alphabet noodles (no added salt), which is a big step considering that regular noodles really put him off. He has also been having fun trying different types of apples. He ended up not liking the turnip, but did try it at least. Homemade pancakes were only interesting for two days. The difficulty with the non-processed foods is that it often takes him an hour to eat an ounce or two of them. He can eat purees and cracker-types of foods much easier and more quickly. Chris decided to make Peter some crackers yesterday, and Peter added garlic powder instead of salt, and Peter enjoyed them, so this may be another way to lower his salt intake. Once we can start shaving off nights of TPN, that will also help reduce his sodium intake.
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