The List...

I love this time of year. I used to look forward to the shift in weather, school starting, new clothes. A new beginning so to speak.

But this year, with the shift of the weather, it brings up some different feelings.

A year ago this past week was when I first heard the words Biliary Atresia.

I remember standing in the doctors office with Dan and my sister and listening to the doctor explain what they thought Philip had and that ultimately he would most likely need a liver transplant. 

I remember breaking down crying in the office, not knowing what the future held for my newborn baby boy. I remember seeing the doctors eyes tear up. I remember my sister holding me and saying we'll all get through this together. There were so many questions racing through my head. What kind of life will he be able to lead? Will he be normal? Is he in pain? Why him? Why us? How the hell am I going to deal with all of this? I remember handing him over to the OR nurse when they did his surgery, then Dr. Prince coming out and saying it all went well, checking each diaper with bated breath hoping there would be some color to his poop to show that the surgery worked.

…And here we are a year later, facing the exact thing I most feared when we first heard about Biliary Atresia. 

A liver transplant.

And to be honest, it hasn't been as dramatic as I had envisioned the whole process. We have been SO blessed that Philip has done so well this past year. Dont get me wrong, he has had some major hiccups but compared to most kids with his disease, he is doing great.

The last two fridays were spent at Mt. Sinai going through a transplant evaluation, which consisted of meeting with Social Work, Nutrition, Infectious Disease, Cardiology(EKG and Echocardiogram), Surgeon and will be getting a CT scan in the next couple of weeks. 

Well Sunday, we got a call from our transplant coordinator that Philip is now listed for a transplant. His PELD score is -4. He is inactive at the moment because they are waiting for the CT scan but he will gain points for just being on the list.

What is PELD? How does it differ from MELD?
Candidates age 11 and younger are placed in categories according to the Pediatric
End-stage Liver Disease (PELD) scoring system. Again there is a Status 1 category
for highly urgent patients, representing about one percent of those listed.All other candidates in this age range receive priority through PELD.
PELD is similar to MELD but uses some different factors to recognize the specific
growth and development needs of children. PELD scores may also range higher
or lower than the range of MELD scores.

The measures used are as follows:

•bilirubin, which measures how effectively the liver excretes bile;

•INR (prothrombin time), which measures the liver’s ability to make blood clotting factors;

•albumin, which measures the liver’s ability to maintain nutrition;

•growth failure; and whether the child is less than one year old.

As with MELD, a patient’s score may go up or down over time depending on the
status of his or her disease. Most candidates will have their PELD score assessed
a number of times while they are on the waiting list. This will help ensure
that donated livers go to the patients in greatest need at that moment.
SOURCE:http://www.unos.org/docs/MELD_PELD.pdf

So since PELD scores are based solely on those measures, Philip's score is so low because he is fairly healthy. But these measures don't necessarily show how sick a patient is. So they can appeal for more points if Philip's health starts to take a turn for the worse.

Unfortunatley, New York has one of the lowest rates for organ donation in the country. So who knows how long Philip will have to wait or how sick he would have to be before he could receive a liver. So we will be going forward with hopes that me or Dan will be able to be a living donor for him. We will start that process in the next few weeks. The screening process for living donors takes 6-8 weeks and if one of us is a match, he could be transplanted soon after.

Some Organ Donation Facts:

• 22% of New Yorkers age 18 and over have enrolled in the New York State Donate Life Registry as organ. tissue and eye donors. Nationwide, the average is 47%.

• On average, 18 people die every day while waiting for organ transplants in the U.S., and every 10 minutes, another name is added to the waiting list. In New York State, someone dies every 15 hours waiting for an organ transplant.
 See more at: http://www.donatelifeny.org/about-donation/quick-facts-about-donation/#sthash.X6jINCoC.dpuf

A Small Victory!

When I was younger I used to like to jump the waves at the beach, but this one time, I guess the water was too rough and a wave came and blind sided me, knocking me off my feet, sending me tumbling under the water. I remember the pressure of the water pushing me down but I wasn't in that deep of water so I kept hitting sand. I finally caught my footing, stood up and BAM! another wave sent me ass over head again under the water, tumbling, fumbling to gain footing. I got my balance yet again and was able to outrun the incoming waves to the shore. This past year, particularly the last few months had me thinking about this feeling.  Just this feeling like I couldn't catch my breath, one hit after another. The bleeding episode, the endoscopies, hospital stays, doctors appointments, the passing of nana.

Then Tuesday morning we headed back to the hospital for Philip's third Endoscopy in a month. It seemed to take longer than usual but we were elated to hear that they did not find any more varices they had to treat. There is one small one but it is not raised so they didn't treat it. So Philip was able to drink right away and we were able to come home about an hour after the procedure. A small Victory that felt so sweet! Finally, a break in the waves even if it is short lived, it is just enough to make it to the shore and catch my breath a bit.