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!
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