Still off TPN and making many enteral changes

Peter is still off IV nutrition.  He had his CAIR appointment in Boston last week.  He grew another centimeter taller, but the weight gain is not true weight gain, but rather is fluid retention.  We are trying to concentrate his overnight formula and cut back on the volume.  He had gotten up to 440 ml of formula overnight, and we are cutting back to 400 ml formula, with extra Duocal in it to add more calories.

Meanwhile, we are trying to get rid of his IV iron.  This week he started enteral iron drops instead.  The recommended dose was surprisingly high to me, but the team has researched carefully and assured me this is the correct amount.  Hearing the dose for Peter and knowing that he only had his ostomy closed two and a half months ago and that this medication may cause constipation even at normal doses, I have been very cautious as we start our way up to what has been prescribed. He is supposed to get 69 mg, twice a day.  So far, I have him up to 23 mg twice a day and he is doing OK.  The reason for the really high dose is that his stores are below normal.  He has been taking IV iron for years, but after his last two surgeries, has not gotten his iron levels back to a normal range.  The plan is to keep working him up to a normal range enterally, to prove that his bowel can absorb and handle the iron that he needs. 

If his bowel can handle his iron needs, that gets us closer to getting the IV PICC line out on our next visit to Boston.  To get the PICC line out, he will need to demonstrate that he has no need for it for IV nutrition or IV meds (iron is the only med he is currently still taking IV).  Labs can always be drawn without the PICC line, although that has always been a nice perk to having one.

Other news is that Peter's zinc and vitamin D stores are low.  We are going to begin supplementing with extra zinc, beyond what is in his multivitamin.  The vitamin D stores have been an ongoing issue for a good while, with supplementing going as high as 8000 IU to as low as 2000 IU.  We are going to try 4000 IU this month and see how he does on that. 

Meanwhile, Peter's multivitamin will be changing, as the company is no longer making the vitamin, Source CF.  Peter does not have CF (cystic fibrosis), but requires a multivitamin with high amount of fat soluble vitamins, and this one is made for patients with CF.  Peter will switch to AquADEKs brand now.  It is not exactly the same as Source CF in vitamin amounts or ingredients, but there is little choice when trying to find other brands of fat-soluble vitamins that are actually made to be water-soluble for those who may have fat malabsorption.

As you can see, there are many changes taking place with Peter's enteral intake.  The "funny" thing about all of these changes though, is that patients are not supposed to make more than one change at a time, so that if there is a side-effect, it is more obvious what has caused it.  I am trying to space out the changes as best I can, and hope that there are no unwanted side-effects, but if there are, that I can figure out what new change caused it.  There will be lots of detailed record-keeping this month!