Increased outputs and formula changes

We are back to Elecare from Vital Jr in effort to see if Peter is having some intolerance to Vital Jr. Peter's fistula and ileostomy outputs have drifted up over the last couple of months, and he has had 3 bouts of really high outputs with 2 needing him to go on Pedialyte for 2 or 4 days until it settled out. We were emptying his fistula bag every 1 to 2 hours at some points!

The other questions as to why his outputs have gone up so dramatically would be whether he is having bacterial overgrowth (SBBO)or if this is an anatomical change. We see that the fistula's output is consistently higher than the ileostomy over the last few months, but that did not occur anywhere near the timing of the gastrostomy repair which ended the stomach losses. Peter doesn't display his SBBO symptoms from the past though, so hard to say it is that. We did withhold his probiotics for two separate weeks in December, so it could be overgrowth. We are adding kefir and daily plain Stonyfield yogurt to his diet to assist with the usual probiotics in the event that he needs an extra boost of probiotic. Peter's history of reactions to enteral antibiotics for SBBO keeps us all hesitant to treat him empirically with a round or two of antibiotics. If anyone wants to know what he uses, we are still on VSL#3 and florastor, rotating one week on one and one week on the other, usually without a break between.

The good news seems to be that with the caloric decline that occurred by going back on 26 calorie Elecare from 30 calorie Vital Jr and by decreasing the volume from 950 to 650 per day, is that Peter is HUNGRY! He is remarkably interested in nibbling on crackers now, and as such is working on his feeding skills without prompting. And, although he has lost about two pounds with the diarrhea and with the reduction in calories, his new-found hunger may be showing us that his gut has been working well absorbing Vital Jr all along, despite the increased outputs.

Because he has lost weight, is showing us that he is hungry, and is continuing to slow down with his fistula output, we are going up in Elecare volume over the next few days. Hopefully he will regain the weight and keep the fistula output down. We will reassess where he is when back up in Boston.

Peter's new PICC

The week before Christmas Peter needed to have his monthly labs drawn from his PICC line. Routine labs, routine procedure. Not this time. This time the PICC would not give more than 2mL of blood for labs and we needed about 20mL. So after some talks with the homecare nursing team and Children's Boston, we agreed that Peter's line could be tPA'd in the home setting now that he is bigger and no longer having active bleeding episodes that he had in the past. It was successful, got the blood needed for the labs, and then the line stopped flushing completely, and upon closer inspection, it had little particles floating in it. Everybody's guess is that the hard crystallized build up that we have seen in the line since last Feb, must have reacted with the tPA and started to flake off. Ugh! Since he has a dual lumen PICC, we decided to use the other lumen for his TPN and to get the line replaced. Monday the 21st of December we went to CHOP for a replacement PICC. It was just to be another rewire, which should be a reinsertion of a guidewire into the old PICC, removal of the old PICC, and then insertion of a new PICC over the guidewire. It should just take an hour once he goes into Interventional Radiology. We have had this done a few times now. Well, things started by a delay of three hours before even getting taken into the IR room, but no one telling us that the delay was that long. We kept being told we would be going there shortly. Three hours of keeping a wiggly four year old entertained is exhausting, and there was me AND one of Peter's nurses there! Then once he had been in IR for well over an hour and we still hadn't heard how things were going, I asked the nurse. She called IR and then they told her that the IR doc was in the process of placing the PICC line into the other arm because the rewire had been unsuccessful. When Peter was brought to the recovery room, we were told by the doctor that she had tried very hard to rewire, but the vein that the PICC had been in started spasming and was narrowed, so it was time to give that vein a rest. Poor Peter had to be given more sedation for that longer procedure though, so we ended up staying at CHOP until 8:30 that night and were the last to leave the IR recovery area. He was beside himself on the ride home - tired, and very thirsty. None of us even thought about his fluid replacement over the day other than a 300 mL bolus of normal saline during the procedure. Fortunately we had some Pedialyte to offer and were able to pick up more at WalMart on the way home.

Now for the real bombshell... the new PICC line has a LEAK!! At first I thought I was just being careless and getting Peter wet when flushing the line. Then I thought that perhaps the cap was faulty. Finally, we took a long hard look at it and unbelivingly, watched a drop of the flush solution drip out of the line as we flushed it. We flushed again, and there was another drip of solution. We took off the dressing and found that the dressing edges were wet from this leak, and the stat-lock was holding little droplets of fluid inside. The 'good news' is that only one of the two lumens has a leak, so once again we can give TPN until we can get a new line put in. Boston agreed to our request that they redo the PICC for us when we are up there again for Peter's intestinal rehab visit. Meanwhile, the red lumen with the leak is clamped off tightly, to be unused and unflushed until we replace it in a couple of weeks.

Halloween and birthday photos

Our miracle child celebrating his fourth year! There is much to celebrate!!





"Bob 'd Builder" for Halloween

Back from Boston

NORMAL bilirubin - direct and indirect!
NORMAL albumin!
NORMAL hematocrit! (hemaglobin still a little low, but pretty close to normal!)

Wait, there's more....

Another night off TPN now, for a total of three nights off TPN per week!

We had a very good checkup in Boston... good labs too! Our biggest focus this time was that we still need to work on Peter's vitamin D status. Even though we have had him at twice the usual dose for the last 3 months or so, his stores still do not seem to be high enough. He will now go to 600 IU of vitamin D per day. During this trip we found out that Dr. Lo, one of the doctors that we see in CAIR clinic, has his PhD in vitamin D metabolism. That sure puts my mind at ease as we assess Peter's vitamin D, calcium, and overall bone status to assure he gets as far away from his past osteopenia as possible.

A new age, feeds, and the new tooth

Peter has turned four years old! Peter's birthday is All Saints' Day. It was an exciting birthday for all of us, as this is the first year that he really seemed to understand and care that it was his birthday. He even had gift requests - books, puzzles, and chapstick (he is a mouth breather and his lips get very dry if we don't keep up with ointment and chapstick). He decided upon pumpkin pie as his "cake," since he has to have pureed foods still. Better than the pumpkin pie was the whipped cream, though. He has asked for whipped cream again.

Photos of birthday and Halloween to follow soon.

On the medical front, Peter has made good strides (great strides for Peter) with his feeding increase sice we were in Boston nearly two months ago. He has gone from two ounces of baby food daily to five ounces of baby food daily. Vital Jr. has increased from 650 mL per day to 850 mL per day. He is taking a little over half of the Vital Jr. formula overnight via pump, and the rest is by mouth. All of the baby food is by mouth. He is even eating Gerber Puffs and Gerber Li'l Crunchies now. He ate a whole can of Gerber Li'l Crunchies this week in only about 5 days. They look like cheese puffs, and he ate about 85 of them over 5 days!

The new tooth is beginning to emerge. The top is........ BROWN! We are disappointed, needless to say. We are praying that the rest of his teeth will look better. The dentist told us two years ago that the only way to "fix" the color of teeth stained by bilirubin is to veneer them. Bleach will not fix the color. Hopefully they will be strong... more important than color in the long run.