Since we started this journey with Philip being diagnosed with Biliary Atresia, there have always been signs along the way, assuring me that someone was watching over us.
When he was in the hospital with a liver infection, a wing mark appeared on his window...
After my Nana passed away, I felt it even more so. Birds remind me of her, She always loved birds, feeding them out of the back door of the house, even hearing stories from when she worked the bird show at the World's Fair. So when Philip needed the blood transfusion, when a feather appeared out of nowhere, floating in the air, it really hugged my heart to know she was there watching over us.
Then yesterday morning, I wasn't too surprised that while me and Dan were talking about waiting to hear about him being a match that we saw two Cardinals sitting outside our house in a tree in the front yard.
There's a saying that Cardinals appear when angels are near. They are also known to symbolize health, hope, rejuvenation, celebration and joy.
So it seems they had a double meaning as it looks like Dan is a MATCH!!!
They calculated and they would only need to take 13% of Dans Liver to give to Philip.
Dan just has to be cleared by cardiology, which he has an appointment tomorrow and Philip has a CT scan next Monday. Then just have to tie up some loose ends and hopefully we can schedule the transplant sometime soon.
In the meantime, I'll keep looking for the signs!
It's early, still dark outside, as we wake the kids up, gather all of their stuff and pack the car to drop them off at my moms before we get on the road for a two day visit with Mt. Sinai. In the car we talk a little about Philip and Danny, our nerves, (OK my nerves) and this new journey we're about to start. But it's mostly silent, both of us knowing the importance of the next two days and how the results will impact our lives, and not knowing what the many appointments ahead would hold. We just know that while Philip is still fairly healthy, he still has a life threatening illness. His PELD score does not reflect the risk he faces waiting on the list. And with his low score he can wait years to be called for a cadaveric liver. Do we wait for the call and risk him having an even worse GI bleed and get sicker or do we try to be donors ourselves and start to hopefully move forward with good health? The itching has gone from bad to worse. So it really was a no brainer for us. Move forward with Living Donation. We decided to have Dan try first because Philip is very attached to me and we think he may fare better in recovery if I am with him.
Living Donation is handled by a completely separate team than Philip's. So Wednesday started by meeting with the Transplant Nurse Coordinator, followed by Social Work, then a Nutritionist, and Financial Coordinator. And Lastly 16 vials of bloodwork. They test for everything. Their main concern is the health of the donor. If there is any little thing that can increase the risk of complications, they will rule you out as a donor. The team we met with seems very caring and attentive to all our needs. They are very strict about confidentially so I was not allowed in some of the appointments like Social Work. They want to make sure the donor is not being pressured into donating and that Philip is not paying him off in matchbox cars...lol
Thursday morning started with a chest X-ray, then MRI. After that we met with the surgeon who would do Dan's surgery, then we met with the hepatologist who will follow the donors care after the transplant. Finally Dan had to meet with the psychiatrist.
We will know on Monday if Dan is a match. If not, I will plan to go ahead and be tested next.
There was so much information to take in it was head spinning. They really want to hit home that there is no medical benefit to the donor. You could in fact be putting yourself in a position of worsening your health. Being that Dan's job requires physical activity they said he could potentially be out of work for 3 months and then go back slowly to full activity at work. Your whole body's energy will be going to regenerate the liver so the donor will be very tired at first, not eating the same, pain. They said people can actually feel their liver growing back, with little twinges here and there. It's pretty amazing stuff, but is pretty terrifying at the same time.
For me at least. Dan seems to be fine with the whole thing. A little nervous but not a basket case like me. What if we go through with the transplant and Philip gets worse? What if Dan has a complication? What is Philip has a complication? How will I deal with the 2 of them in the hospital? How is Danny going to deal with having his whole family gone for a couple of weeks? Not just one of us but ALL of us? Poor little guy. I know he will be with family and be fine but it has to have some effect on him. I am going to contact social work to see if they have any resources for him.
Just endless questions in my head. But we've faced the last 2 years head on, what choice do you have really when faced with a situation like ours, and we'll keep facing it head on, whatever comes. Keep smiling and trying to find the humor in things. And knowing all of the support we have from family and friends will carry us through any obstacle we face.
This is a picture Dan saw as soon as he walked in the office. Could it be a sign...?
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.
