From "if" to "when"

Since Gavin's diagnosis of Alpha-1 back in January, we've been in "if Gavin needs a liver transplant" mode, and just pushed the possibility to the back of our minds and tried to go on with life as usual. (Denial is a great tool sometimes!) We hoped that he would be like most Alpha-1 babies who generally get "better" around their 1st birthday.

Unfortunately, recently Gavin's doctor told us that the question is no longer "if" but "when" he will need this life-saving operation. We now need to register Gavin at a transplant hospital and have him placed on the organ donation list.

It has been an emotional week trying to accept this new path that we'll be traveling down with our sweet little boy. There have been lots of ups and downs as we struggle through all the different feelings...one minute we're resolved and ready, the next terrified and crying, and sometimes even angry that little babies (our little baby!) have to deal with such hard things.

Added on top of that are the 50 phone calls we are fielding every day (well, it feels like that many!) from all the various medical personnel who are, and will be, involved in Gavin's care. There is just so much information to take in and so many things to get ready.

We will be registering Gavin soon at the UCLA Medical Center in Los Angeles, California. That is the closest transplant center to Arizona, but it is also one of the best on the west coast. It takes 2-3 days for the registration process. Once there we will get to meet the transplant team and they will do some more testing on Gavin. He will get a PELD Score based on the severity of his condition, blood work, height, weight, and age, and that will decide where he is placed on the list.

After that Gavin will get blood work done every 1-2 weeks so they can re-evaluate his condition and move him up or down on the list accordingly. However, we won't ever really know exactly when he will get the transplant...its going to be one of those things that "we'll know when we know!"

We are hoping that Andre will be able to do a live donor transplant, where they would take a small part of his liver to give to Gavin. (they are both O-) That way Gavin wouldn't need to wait for a liver to become available, while in the meantime getting more sick and possibly being admitted to the hospital & transferred to UCLA weeks, or even months beforehand. Its a fine line between being sick enough to get your "gift of life", but being well enough to undergo the necessary surgery.

After the transplant we will need to stay in the LA area for at least 3 months so they can keep a close watch on Gavin. And then we'll need to go back every so often for check-ups. In almost every case the patient will deal with infection and/or rejection during the recovery stage. It is really scary to think about...already knowing that there will be some major bumps in his recovery, even after the transplant is done. He will also be on anti-rejection drugs for the rest of his life, which will weaken his immune system, making it easier for him to get sick. And there is also the possibility of his body rejecting the new liver and then needing another transplant, which can happen immediately, during the initial recovery period, or months or even years later.

Andre will not be able to work for those 3 months (especially if he ends up being the donor). We will also need a place to stay in LA and figure out how to pay for our bills back home, food, gas, living costs, etc. What makes it even more difficult is that Gavin's older brother and sister will most likely need to stay home, and we aren't sure yet how we will arrange for their care (which will be especially hard if its during the school year)...or how they would be able to come out to California so we could see them each month.

In anticipation of those challenges, we are opening a charity fund in Gavin's name through a local bank, which will be linked to with Paypal.com in the upper right hand side if this page (hopefully before this weekend). We're also hoping to do some fundraisers...ideas that are in the works so far are a golf tournament through Andre's work, a charity motorcycle ride to Tortilla Flats, a neighborhood yard sale, donation jars, and possibly a dinner. If anyone is interested and willing to help out, let us know! We'd also love to hear your input and new ideas!!! Email us at info@giftforgavin.org!

We're really grateful for all the support our family and friends have already shown us with Gavin's previous struggles. If anything, we are certainly going to learn humility! :) And trusting our Heavenly Father to help us through.