Masterpiece

This may just be paint on a page to you...but to me, this is a masterpiece. Abby was able to go to toddler Sunday school for the first time last Sunday and she did arts and crafts!! This was a HUGE deal for us as every milestone Abigail achieves is a marathon achievement! And this little masterpiece on our fridge is proof of that!

As Abby continues to flourish, so does her raging MMA. We are now in the hospital every 4 weeks for a metabolic crisis with every stay causing her blood levels to drop a little lower and a little faster which is now requiring blood transfusions with every stay as well. This is rare in metabolic kiddos...possible but rare. And because of that, the medical team is nervous for Abby. So, we are quickly going through the evaluation process to get Abigail on the liver transplant list.

 We had our first set of meetings with the Children's Hospital of Philadelphia transplant team yesterday and both Dave and I were thoroughly impressed. I am going to do my best to present the highlights from our meetings, what the next steps look like, and how the process will work.

 As many people know, the transplant list comes with staging of the patient and different scores based on the severity of the patient's illness. Scores are different for adults and children with children usually scoring higher than adults due to being children. However, because of Abigail's severe metabolic disorder she will automatically be placed at what is known as level 1B. This level is reserved for children with known metabolic disorders or failing livers. There is no numerical score associated with this level. To give you an example of just how high she will be listed- if a liver is found that is compatible with Abigail's needs, it is first offered to someone who is basically dying and in need of a liver right away. If no one from the region or nation needs that liver right away, Abigail will be next. Though there will probably be a wait, it will not be a long wait. And yes, just like the movies, we need to have our cellphones charged and on at all times because the call for her liver could come at any time. 

 Once Abigail's liver is found and matched, we will be admitted to CHOP where she will be prepped for a 6 to 10 hour surgery. Abigail's donor liver could come from a deceased child, a deceased adult, or from a living adult donor. From the adult, a partial portion of the liver is removed and given to Abby yet, that portion will grow and function like a normal liver. What an AMAZING God we serve! When surgery is complete, Abby will spend 1 to 3 days in the Pediatric Intensive Care Unit where she will be monitored for many different things. Once she is stable, we will be transferred to the regular floor where we will probably stay for another week to 10 days. Overall, the stay will be about 2 weeks. 

Abigail's journey does not stop there though! Once home, we will have follow up appointments weekly for a month, then biweekly for a month, etc. She will be placed on medications to keep her immunocompromised so that her body does not try and fight the new liver as a foreign object. She will remain somewhat immunocompromised her whole life, but most significantly in the first 6 months to a year. We are to maintain strict control of her medications and keep her from any viral infections. And, while the benefits of a liver transplant outweigh the risks, there are still very real risks that come with a liver transplant that we will be monitoring for closely.

As Dave and I sat and listened to everyone come and share their piece of the journey and how they will be helping us along the way, we were overwhelmed with emotions. Yes, this is a very scary unknown journey. Yes, there are risks we don't like to think about or discuss. But, yes, we serve a good, good God who is creating a beautiful masterpiece out of these fragmented, frail pieces of our lives. Some of the things we found out that were huge encouragements to us were:

1) We qualify, by 1 mile, to live in the Gift of Life house in Philadelphia while Abigail is getting her transplant. Gift of Life is the organ transplant organization and this house is where families can sleep, eat, and live while their loved one is getting a transplant. Because of Abby's Medicaid, we will be able to stay there for a very small monetary amount and all dinners and shuttles as well as hotel type lodging are provided to us.

2) Abigail will be given a Make-A-Wish once she is post-transplant. Our wish is that we would be able to take her back to her home country of Beijing, China and the social workers seemed to think this was a very feasible wish!

3) Because of Abigail's Medicaid, her $1.7 million dollar transplant stay will be completely covered! How blessed we are to live in a country that affords us this kind of healthcare coverage!

In the midst of these incredible blessings though, we still have some needs that will need to be covered. We will be beginning a fundraising page through the Children's Organ Transplant Association, or COTA. We will have more information about that later. We will also need help with childcare for Andrew and possibly some in-home help once Abigail is home. Again, keep an eye out for another blog that will address these needs and how you can help! Many people have asked how they can help and we are so very grateful! 

This morning as I prepared to head in to the hospital for yet another stay for our precious Abby, I broke down in tears. This is tough. This is hard. This is never what you desire for your child. And yet, we know it is for her good. We know we are making the best choice we can make for her and we know the outcomes are very good. But, in my frail, weak self I have a hard time thinking of all she will go through to get there. 

As I listened to the words of Danny Gokey's song, "Masterpiece", it reminded me that God sees the finished picture. He has a plan and though right now all I see are the frays and mismatched yarn on the back, He sees the beautiful tapestry on the front. Trusting His heart as we begin this liver transplant journey with this beautiful child He has given to us.

"Heart trusts you for certain
 Head says it's not working
 I'm stuck here still hurting
 But you tell me

 You're making a masterpiece
 You're shaping the soul in me
 You're moving where I can't see
And all I am is in your hands
You're taking me all apart
Like it was your plan from the start
To finish your work of art for all to see You're making a masterpiece"