The PICC line has been removed!!

We are happy to announce that Peter had his PICC line removed by the team in Boston this past Thursday!!  Alleluia!! 

Right after line was pulled out, pressure being held over the site. 

Happiness to have no more PICC, to understand that the hard work of eating has paid off, and to realize that pulling the PICC really did not hurt after all.

Peter has not been without a central line (in his case, a PICC line) since he was 5 months old.  He is now 7 years and 7 months old. 

It is strange, but delightful, to not have a PICC line to worry about right now.  Coram and I are going to arrange the pick-up of his four infusion pumps this week: one for TPN, one for Omegaven, one for IV fluids, and one for IV iron.  Bedtime is now just meds through the G-tube and hooking up the formula.  No ostomies, no IV flushes or IV meds.  There has been so many significant achievements over the years, and especially over the past several months.  We are so grateful!! 

After such great news, I am a little reluctant to mention the downside to Thursday's visit in Boston, yet there are some things still concerning the team.  One is that Peter's abdominal and chest veins are more prominent than ever.  Dr. Jennings thinks the veins in the neck are also distended.  We will follow up next month with an endoscopy to look at the esophageal veins, and possibly an echocardiogram of the heart to check on the vessel size there.  The concern, as I understand, is that his portal hypertension may have gone up.  The ultrasound of the abdomen on this past visit looked good though, so it is possible that these more prominent veins are only looking more distended, but are not actually more problematic.  Peter also may be having some absorption issues in his gut.  We are sorting that out with some stool testing from home and increasing some of his calories and vitamins to see if that helps. 

One could ask why the PICC line was pulled out if everything is not perfect.  Peter has gone two months without using his PICC line for IV fluid or TPN.  He has gone one month without needing IV iron, and in fact has brought up his iron stores better with enteral iron over the last month.  Continuing with the main goal as preservation of the liver, it is better for him to have no central line than to later on have to put one in again if he demonstrates need for one.  A central line is made of plastic and bacteria love plastic, so there is always a fairly high risk of infection that is fairly when someone has a central line.  Infections from central lines can quickly lead to sepsis and organ damage, and the liver can be particularly affected.  We also go back to that quality of life issue, where it makes sense to get rid of something burdensome if it is not really needed.  Peter can now get wet (summertime!) from head to toe and there is no line to worry about.  He isn't so keen on the idea of going in a pool, but is thrilled to be able to wash his own hands and not have me worry that he'll get his PICC line wet.  Won't it be grand if he can keep the PICC line out for good!