The new PICC photo

We don't like the new PICC afterall

There, it's official. We do not like the new PICC that Peter got in January. I do like a PICC line in general, but not this new one. The biggest frustration with it is the placement. This may be a very boring entry for anyone who does not have a PICC line, but for someone familiar with PICCs, perhaps it will be of interest. I do need to vent this frustration, so I am posting it.

For the last three years, Peter's PICC lines were secured with a little adhesive device called a Stat-Lock, which was located about an inch below the actual insetion site of the PICC line. It was a good set-up, as the Stat-Lock was capable of lasting up to a month and did not need to be kept sterile since it was so far away from the insertion site of the PICC.

The new line has the Stat-Lock actually just one or two millimeters from the insertion site, surrounding the site itself, and now needs to be changed every week with the dressing change. The Stat-Lock device has these little "doors" that keep the PICC line from popping back off the device, and these tiny movable posts on which the PICC cross post need to be landed. Somehow this is all to be kept sterile as we are opening and closing the little doors to remove the old Stat-Lock, and then opening and closing little doors as we put on the new Stat-Lock. It can be done on a mannekin arm or on an adult that stays still, but on a four-year-old child, it gets a little tricky, even with another adult immobilizing the arm and Peter's body. To remove the old Stat-Lock, we need to lift up the PICC line, which then tries to work its way out of Peter's arm while we frantically work on keeping it from sliding out, sterile gloves becoming dangerously close to non-sterile, if not truly non-sterile despite our best efforts. It is like trying to manipulate a wet noodle as it wants to slide out and we are trying to push on it to stay in. Once the entire site is cleaned, we can put the PICC line down and hold it more securely, but then we have to lift the PICC line again to place the new Stat-Lock on... trying to be sterile, landing it just a millimeter or two away from the sterile insertion site, wet noodle thing happening again.

The whole procedure is ridiculous in light of the set-up we used to have. We have had so many people remark on how well we maintained his old site and how remarkable it was that he didn't get PICC line infections. With this new line sliding in and out during dressing changes and with the Stat-Lock so close to the insertion site, I will be the one amazed if we are able to keep Peter's line infection free, or from just sliding on out during one of our dressing changes. We are hearing from some of Peter's nurses that this is the current procedure for PICC lines, with the Stat-Lock where our new one is. I will not be surprised to see that the rate of infection also rises with this current trend.

GI plans

It looks like we will plan to do a fluoroscopy study late next month to find out what is going on inside Peter's GI tract. The fistula continues to put out more fluid than it used to, even with the feeds less than half of what they had been when we went up to Boston last time.

A fluoroscopy study on Peter is never easy because he has several places where the contrast fluid leaks out after it is put into his G-tube. The leakage of fluid into his dressing and into his ostomy bags then makes it impossible to see what is going on inside. I am not sure how we are going to work this out, but hope if it involves the removal of ostomy bags during the procedure that we are able to keep the PICC line clean!! We've managed it before, and with many prayers will hopefully manage to keep the line clean again. Dr. Kamin and Dr. Jennings will be there for the one to two hour procedure, and possibly Dr. Kim as well. Dr. Jennings and Dr. Kim are the surgeons who are familiar with Peter's anatomy.

Peter is still on TPN 7 nights a week, as we can't advance his feeds to where they had been before. We are managing to keep his sodium levels stable though, only needing to add a little 1/2 normal saline here and there when his outputs exceed his new baseline.

Please keep Peter in your prayers as we sort out his fistula issues. We are praying for test results that show us that it is time to close the fistula, as well as the doctors finding that it would not be as difficult to surgically close as feared.

An unexpected admission

Peter's CAIR appointment went well, but what we weren't counting on was an admission! Peter's blood sodium was at a value considered critically low, so he was admitted for correction of that low sodium. Apparently correcting hyponatremia (low blood sodium) too rapidly can lead to swelling of the brain, so there needs to be a gradual increase back to normal value, done in an ICU setting, at least until the level is high enough to require less labs and less monitoring.

Peter had been acting well, so the low sodium was a surprise to EVERYONE. The only real change in him has been a fairly high increase in fistula output over the past few weeks, continuing even after we changed to Elecare again (discussed in the last post). Peter dropped two and a half pounds over the last month, some of it is likely true weight loss since we had decreased formula concentration and amount without going up in TPN. More of the loss, though, seems to be the ascites that has disappeared over the last several weeks as the fistula output went up. The fistula output seems to have a high amount of sodium, and that has undoubtedly been the main cause of his low serum sodium.

There are a few reasons that the fistula could be putting out more, but to diagnose the cause with certainty would involve radiation to image the bowel. The prudent thing then is to do some trial and error with feeds and labs to monitor the sodium. If that doesn't work, then we will need to do further testing.

The trick is to prevent another bout of this hyponatremia. As such, the plan now is to go on TPN seven nights a week again, unfortunately. The reason for adding back all three nights off of TPN is because we have had to drastically cut back on feeds in an attempt to get the fistula to slow back down. He is getting just 10 mL an hour of formula now, whereas he had been up to 850 plus of formula a day. The hope is to slowly advance each week and to keep the fistula output from advancing with the formula increase.

The plan also is to keep the ascites off Peter's abdomen now that it is gone. He has had ascites even before the AVM was found. It is one of the symptoms that you often see with liver disease. With ascites, there is too much fluid in the body's abdominal tissue, and sodium affects that. For Peter, "too much sodium" is actually what would be a normal value for most people. When we see his belly get larger, we can tell without labs that his sodium levels are rising. It will be tricky to get his sodium leveled out without his ascites returning. It is so good to see his body without the giant abdomen that he has had for so long, and we all feel it is best for him to keep it from returning... if we can.

I have to say that if ever there was a "better" time for this to have happened, it was during this trip. We had already planned to spend the night in Boston, so we did not have to turn around and drive several hours back. As much as it is stressful going to the ER at 9:30 at night with a four year old who is hooked up to TPN and another IV pump that is the size of a double toaster, and an enteral feeding pump, along with an infant, it would have been so much worse had we needed to drive several hours back or needed to go to some other nearby ER that didn't know him at all. Dr. Kamin graciously called in to make sure that things went smoothly and that all parties involved were following the same plan for Peter. Even on vacation he called in to make sure all was going well. Thank you, Dr. Kamin!

Something of interest to add, is that during our ER trip, we encountered a Fellow who had taken care of Peter when she was a Resident at CHOP. She was just as surprised to see Peter as we were to see her. She remembers when he was at CHOP early on when the AVM had not yet been found, as well as when he was in the ICU at CHOP having bleeds requiring emergency transfusions. And she recalled that we left for Boston from CHOP's ICU to Boston's ICU so that we could get Peter on Omegaven. Now he is four years old, talking, eating, and one happy kid. We emphasized that Omegaven was the medication that helped him be able to get to this point, and that having one physician continually oversee him versus rotating doctors, also got him to this point. Hopefully she will remember these things as she goes on in medicine, and maybe they will be helpful to someone she cares for down the line.

One last thing.... Peter got his new PICC. It is a beauty as far as PICCs go, a little more bulky with the clamp, but it is a single lumen this time, so less bulk overall. Let's hope this one lasts a very long time. It works, so we are off to a better start than with the last PICC.

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.