More updates

The last post was actually from Feb 19, even though dated the same as today, so these are new updates.  We restarted formula last night, just 200 ml at 20 ml per hour.  Peter will just do plain formula, no flavoring, as that will lower the osmolality of the formula and may help decrease the likelihood of diarrhea if it was related to the flavored formula he had been on.  I had read that the formula (Pediasure Peptide 1.0) was on the lower side in osmolality compared to other formulas, but didn't realize that there is a considerable difference in it when choosing flavored formula versus plain.  Just like in the "real world," there are added sugars and colorings in medical-grade formulas.  Now the obvious question is, "Why?!"  With the substantial number of people on medical-grade, prescription-only formulas, couldn't someone do a better job with the composition of them?  I've tasted his strawberry formula and it is too sweet.  It hides the flavor of the plain formula well, but I don't know that the sweetness is as necessary as the strawberry flavor.  Then there is the bright pink color that is created with red food dye FD&C #3.  For some reason plain and vanilla don't need a fancy color, but strawberry does?  There are other formulas on the market, but "plain" is a difficult flavor with all of them, and some of the other formulas we've tried are too thick, come only in vanilla (a flavor that makes him vomit), or are just don't suit his needs.  Maybe some entrepreneur out there will come up with better formula options, like color-free, or low-sugar not artificial.  Fortunately, Peter has a G-tube, so we can give the plain formula to him now overnight and he won't have to taste it.  Hopefully we'll have better luck with this lesser osmolality.

We have found that sodium is becoming a problem now that Peter wants to eat.  Peter has always had problems in retaining sodium and then developing ascites in his belly from accompanying fluid retention.  The best measure to prevent this is just to keep his sodium intake low.  I mistakenly thought that we had some wiggle room while off formula and let him have Cheez-Its, goldfish, pretzels, etc, all loaded with salt.  It only took a week of that too see his belly begin to get big.  Fortunately he is responding well with extra water and taking away the salty foods, and he is losing the ascites.  Unfortunately, he is only six and can't understand why I would buy him these snacks only to take them away.  He actually said that to me in almost those exact words, crying profusely as he said it.  It is quite a juggle with him to work on good foods when all these years we have tried to get him to eat anything, anything, just for the practice of chewing and swallowing.  If he ate 12 goldfish in a day that was impressive.  Now he wants 25 goldfish, and 15 animal cookies, and 20 Cheez-Its, all at one sitting, repeated three times a day.  He is eating three good meals a day, with things like plain yogurt and meat, veggie, and fruit purees, but it is these snack foods which give him the practice of feeding himself and which he absolutely craves.  We are starting to leave out little pieces of kiwi and apple for him to practice with new snack foods, and I'm sure he'll make the transition over to better foods, but it is hard to see him so frustrated trying to understand the concept of moderation now after trying so hard to get him to eat at all.  We went on an outing to the grocery store this past weekend to pick up new foods to try.  That is when we picked up the snack foods listed above, but he also picked up grapefruit and a turnip that he said he MUST try.  "I don't know what a red grapefruit or a turnip tastes like, Mom.  I HAVE to know what they taste like.  I've never tried them before."  I guess we'll go back to the store again this weekend and find some low-sodium things to eat.  He picked out four kinds of cereal to eat when we were there this weekend, but they are not holding his interest like the animal cookies and the salty foods.  He loves bold flavors, but bold flavors seems to have high sodium.  Other short-bowel patients have shared that they crave salty, bold flavors, so Peter's cravings may be more physiologic than psychologic.  I think we are going to have to get pretty creative in finding ways to give strong flavor with low sodium. 

Back on TPN every night

Peter had his check-up in Boston earlier this month.  Peter is now back on 7 nights of TPN and all formula was taken away, since his ostomy outputs were so high and he was so skinny when they saw him. As much as we have enjoyed the freedom of lesser nights of TPN, we agreed that it was best to just put him back on it and get a little more weight on him. His upper arms are actually skinner than his forearms now, and his bottom just looks wasted. Ironically, he seems to feel good with lesser weight. With the adding of TPN, the other decision made was to remove all formula from his diet for a while and just let him eat what he wants. It felt like a big set-back, but we were reassured by the docs that in doing all of this, watching what happens to his ostomy output now will help in the diagnosis of why he seems to be dumping out all that we put into him. Infection has been ruled out, and we are trying to determine if this was a long-lasting transient problem post antibiotic use, an issue with his formula, or if he is actually demonstrating a need for the ostomy to be taken down so he has more bowel length to work with. (That will be another high-risk surgery, so no one wants to just go ahead and do it at this point unless he shows us it is necessary.)

The results of this have been that his ostomy output has gone way, way down, and his weight is going back up. In fact, we were able to shave off some of the volume of TPN this weekend, and even though he still has it for 7 nights a week, the next step in this process will be to start shaving off one night, then two, etc. 

But the silver lining of all of this is that he is hungry and wanting to eat real food now! So, we have been going up on his real food instead of using formula, a little each day, and so far his ostomy output is still down. He is really having a good time with food, pretty much grazing all day. It is such a blessing to see him want to eat instead of trying to convince him of the merits of drinking formula. I am still trying to work on the concept that cookies are more of a treat than part of a meal, but we'll get there. We'll likely have to add some formula into his diet again, but most likely we will be able to just do that at night if he is willing to keep advancing in real food during the day. 

I think to many people the excitement of this real foods achievement is very abstract.  I know that I would have a hard time understanding why it is exciting to see a six year old grazing on a piece of grapefruit or goldfish or tasting ranch dressing, if I had not have the experience with Peter that I have had.  He is not a "picky eater," but rather a kid who has always had such a keen interest in what other people are eating, in reading and asking about different types of food, but never with an appetite to taste them.  All of a sudden he is hungry and wanting to know what these things taste like.  It is like a whole new world has opened up for him.  As we quietly lamented the return of the TPN regime, a beautiful new dimension opened up for him!