Friday, February 9, 2018

Back on TPN... as of last April!

I'm glad that these blog accounts don't just disappear after long silences. Maybe it is best to just update in summary form from time to time, versus delivering updates blow by blow. It does make for some very long pauses, but it also means less time on the computer, too. Here is the latest in summary fashion.

Last April, after 4 years off TPN, Peter went back on TPN. He had been having a slow nutritional decline, which was only obvious in retrospect. We were noticing small, but increasing issues, such as hand tremors; episodic "pins and needles" in his hands, feet, and legs; a strange month-long eruption of red-brown petechiae-like spots over both legs; heavy dandruff. Peter started losing weight, and then he went into a full month of GI distress/increased gut motility, ending up with a loss of about 10 pounds over a two month period, and episodes of rectal bleeding. The team was concerned not only about the nutritional losses, but the possibility and likelihood that Peter was entering liver failure. Easter weekend, Peter was admitted to CHOP and put on IV hydration and then went up to Boston Children's Hospital to get a central line (a Broviac instead of a PICC this time) and start TPN. The team agreed he could also go back on Omegaven as his lipid. Within a month or two, Peter had regained every bit of the weight he had lost, and the unusual symptoms he had prior to restarting TPN had gone away. Peter's labs started looking a little bit better as well.

Peter is happy about going to Boston every two months again, as he loves to travel and cities are of great interest to him. He is quite frustrated having a central line and TPN, though. His liver is being carefully watched and monitored, as most of the images and tests suggest it is in some stage of cirrhosis. We spent many months this past year thinking that he will imminently need to get re-evaluated for a multivisceral transplant. As of our last visit to Boston, though, the decision is that we can hold off on listing a little longer for now, given his overall gains and improving labs. He will get another MRI of his liver in four months, and we'll see how that compares to the one he had towards the end of 2017.

On a less medical note, Peter is 12 years old now! He still enjoys geography and fact books and trying new foods (even though his appetite is down now that he is on TPN again). In addition to wanting to be a world traveler, chef, cartographer, and artist, this year he learned about Thomas Edison and has become inspired to add "inventor" to his list of career aspirations.

2 comments:

Unknown said...

Hey, I ran across your blog at random. You don't know me from a can of paint, but I just want to tell you, you are an amazing mother! You have stayed so strong for your son and have been there for him every step of the way. You are a beautiful soul and so is your son. I pray he has a happy, long and healthy life. You are doing great mom! Never doubt yourself or the decisions you make for your son.
(((Hugs)))❤

maria paula said...

I came across this blog too so suddenly and it makes me happy how supportive you are with all your son has been going through, I'm sure he'll be such an amazing person just like you. I hope your family is doing so great today, sending love and blessings!