The Inevitable and the Unknown.

I'm not really sure where to start this post but the last few weeks I've been overrun with so many emotions and feelings, it's taken me a while to actually want to put it all down in writing.

So many feelings...

Happy, sadness, fear, relief, anxiety, exhaustion, loneliness, paranoia, confusion just to name a few. Sometimes just one at a time but then a wave of all at once, the weight crushing at times, paralyzing me. Feeling the constant buzz in my chest and butterflies in my stomach. But, they have finally settled a little and I am able to move forward a bit onto a road we've known we'd likely have to take but when Philip's health stabilized for so long, we prayed and hoped it wouldn't happen for a while or that he may be one of the lucky ones. 

But after the bleed he had, we met with Mt. Sinai last week and transplant is inevitable. He is now actively listed for transplant. Philip is in a bit of a unique situation as his liver is still doing its job and according to the numbers of his bloodwork he is still very low on the list. This means he would not likely be called anytime soon for a cadaver liver.  It's not impossible but again, not likely. He unfortunately is dealing with issues having to do with the portal hypertension and these GI bleeds which are a result of the existing and on going damage to his liver. Every day he is at risk of a life threatening bleed. There is no way to predict if and when it will happen. Along with his severe itching that wakes him every couple of hours at night which has gotten worse, They have suggested we move forward with a living donor since we had expressed interest in that once before. So we asked if doing it in a month would be too soon because we don't want to rush into anything if he is too healthy; and the doctor said, listen, if we had known he would have had this past bleed, they would have suggested to do it a couple of months prior. So in their opinion doing it in say a month is not too soon. So, we went home with some literature to read about living donation and it is some scary stuff.

There are major risks with such a surgery and so many possible outcomes it is literally terrifying. The fear of the unknown is so crippling. Not only do you have to worry about Philip accepting the liver and rejection and infection afterwards but then you have to worry about complications with the donor like vascular issues and bile leaks and them possibly needing A transplant themselves and even death. There are so many possible outcomes,  It's makes your head spin. 

I was speaking with Philips pediatrician about my fears and she put me at ease a little. She said hey, do the testing, take it day by day. You guys may not even be matches and then it is out of our hands anyway. And she is right, don't worry until there's something to worry about, right?(insert nervous laugh here)

After we met with transplant, Philip was scheduled for an endoscopy to check for more varices which they did find. They had to inject two, one of which started to bleed when injected which has never happened before. The injection in theory is supposed to collapse the vein and stop it  from bleeding. She had to apply pressure with the scope and it did stop bleeding. They checked his blood count just in case and it was good. She feels that maybe it bled because the pressure from the portal hypertension is just that high in the varices. So we stayed overnight again but Philip took it like a champ this time. We got to go to the playroom to keep his mind off of not drinking or eating. He loved it. He talked to everyone and asked if they could help him play. He really has such an amazing personality and it's so fun to watch him interact with everyone.

Through all of the worries, we have decided to try to move forward for living donation. We're living in fear everyday that every time he coughs that it will be blood or every poop will be black. And the poor kid doesn't sleep anymore really because of the itching (nor do we lol) We've decided that it's enough. So Dan has decided he would like to try to be Philips donor and while we wait to hear back from living donation, We will take every day, minute by minute, and pray that he can hold off bleeding or having any other major issues until we can get him transplanted. 

 Yay Play Room!

                   I don't sleep at night :(

  Scratch Wounds

Yay, My Own room with cool blue lighting!

         Yay, Donut Ball!