Updates on health and enoying summer

Peter is still doing well without his PICC line.  He has been TPN-free for four months and without a central line (his PICC line) for about five weeks.  He hasn't really gained much weight, but he has grown a little bit in height.  His arm circumference measurement was only slightly down, but still in good range, so we can now wait to go up to Boston for two more months instead of going up once a month. 

Peter's check up included a cardiac exam, complete with echo and EKG.  His jugular veins seem pronounced, as mentioned in the previous post, and after the echo, there is concern about his heart being in a "high cardiac output state."  He will get a cardiac MRI when we are up next.  The high cardiac output could be due to the portal hypertension or possibly a new arteriovenous malformation (AVM).  If this is a new AVM, it should not lead to a situation like we encountered with the liver, but rather should be capable of getting closed off if it can be found.  OR, the MRI may show that he really doesn't have such a high output after all.  Apparently, the MRI can take more accurate measurements of the cardiac output than an echo.  His heart rhythm is good and he is not having outwardly visible cardiac symptoms.  There is not an urgency for the test, so we are going to get the test done when we are back in Boston for his usual CAIR visist again. 

The endoscopy went well.  Peter's esophageal veins were essentially unchanged and there was nothing that needed to be banded.  That is excellent news.  Although we see HUGE collateral veins on his abdomen, which extend all the way up to his armpits, they are not showing up in the esophagus where a bleed could be life-threatening.  I have heard it put that the collateral veins are helping to decompress his portal hypertension, so despite the aesthetic issue of them being visible all over his belly, they are better for his health.  

Peter's stool tests indicate better food absorption than we thought, so that was more good news.  Also, he absorbed his iron well enough last month that his iron stores are in a normal range and he was able to go down considerably in the dose.   We are now trying to cut back on his Protonix (pantoprazole), which is a proton-pump inhibitor, used for controlling acid reflux.  He is down to 8 mg from 20 mg, and seems to be tolerating the wean fine at this point.  He has been on daily acid reflux meds since his early hospitalization as an infant.  To me, it would seem that the more we work his gut with feeds, the greater the chance of gastric distress in a person who has had the GI issues he has had.  It is nice to see that may not be the case.

Back to the PICC-less Peter.... he has been enjoying his first summer of getting really wet.  He still won't admit to liking baths, but he has usually rushed into the tub within a minute of the water going on.  Below are some photos from the summer.  Peter has finally been able to, and willing to, get into the wading pool on some of the hot days.  He splashed around in the water and even ventured kayaking on our last trip to Boston, where we visited with an aunt and uncle on the lake. This summer has been his first time in the water, and he has had so much fun! 

Peter is still into landmarks and geography, and on this trip, Peter got to see the CT State House building up close, instead of our usual whizzing by at 65 MPH on the highway.  He was so pleased to get a chance to see it up close!  Yes, this child is a bit of a geography fanatic.  How many children do you know who at age seven pour over atlases and can tell you the names and locations of places like United Arab Emirates, the Platte River, and the capitals of nearly every country in the world?  The doctors and nurses all get a kick out of quizzing him to see if they can stump him.  Now we need to find a friend for him who likes geography and wants to share this interest with him!