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Thursday, September 3, 2009

BIG decisions

We had some big decisions to make this past week. The most crucial choice, while waiting on the transplant list, is what to do about our living situation.

We have two obvious scenarios. One is to stay in Arizona and contract an air-medical transport to get us to Loma Linda when we get the call, since flying distance is close enough to make the time frame. The other is to move to Southern California and wait there. With her being listed as a Level 2, our estimated wait time is a week to 6+ months. It's a HUGE window.

Moving to California has three possible problems. One is that we get all of our things over to a place we find to rent out and get the call just weeks later. Our burden then would be having to move our things back to storage in Arizona and cancel our rental once Gabriella is admitted to the hospital and receives her new heart. Once she is admitted to the hospital, we are eligible for Ronald McDonald house or one of the other hospital housing arrangements. The other problem is that we wait 6+ months. That's 6 months we could be in Arizona with our family, for the holidays and birthdays, and in a semi-normal environment. That's also 6 months we wouldn't have to pay a SoCal style rent, which runs about double what it does here. The last problem is PJ. Not that HE is a problem, but what are we going to do when we get that call? One of us would have to stay out with him, because he won't be able to go into the hospital. We don't know anyone there that could take him if we get a 2am phone call.

Of course, the perks to moving include being close for when the call comes. We would be there and ready, Paul's job established and running for him to work remotely. We would be local for our monthly clinic visits and if there was ever an emergency, she will be there already.

Our other option, to stay in Arizona, poses many positives and negatives as well. We would be here with our family, spending less on housing, and the kids in a familiar environment. Paul's commute would be minimal in comparison to the commute if we moved. But being tied down in our home is a problem. When we get that call and fly over, we leave all these loose ends to come back to while Gabriella is recovering, and which one of us will want to leave her??

What we have come to the conclusion of, and with the gracious offer of my mom and kindness of my landlord to break our lease, we will be moving in with my mom while we wait. They have a house big enough to where we can have 2 rooms and a family room all for us. We will be saving money by not having a rent to pay, which is a help in more than one way. We will be with our family, and if it does take 6 months to get the call, at least we were together with all of them. And if it is only a few weeks, we have all of our loose ends tied up. When we DO get the call, we will have much of our personal stuff in storage, and only the necessities to clean up at my mom's that someone can help us with.... most if it going to SoCal with us, like clothes and personal items. We will arrange air transport, and I have comfort in knowing that once I run Gabriella to the airport and we take off, SOMEONE here in the family will be able to tend to PJ for me. The weeks Gabriella is in the hospital, Paul will be able to get set up to work remotely in SoCal and we will be approved for hospital/medical related housing.

It seems like a lot... and there are even more factors I am now realizing I didn't include here but were relevant to our decision. The hardest part for us is making these kinds of decisions. Are we doing the best possible thing for our family and our daughter's health? For our future when we come home? For our extended family? The good thing is the hospital is giving us both options, and supporting us in whichever we choose, and this is what we have decided is the best. Things could always change, and we are keeping our option open. If an opportunity arises to move over near the hospital in a furnished place at a reasonable rate, it might be smart. But given what we have been given, this is the choice we made.

The OTHER big decision is Make a Wish. We had been told when we went to Loma Linda that Gabriella will be listed soon. She still isn't on the list, and I have no firm date when they process the paperwork to do so. BUT we were faced with a decision whether to go or delay it, and told it was our choice.

Pro's to going now, verses waiting until after the transplant: She is not on any medications and will be on many, multiple times a day afterwards. She is not at any increased risk to illness, but will be highly susceptible afterwards, creating a new challenge when we do eventually go. She is relatively healthy and full of energy, which can take a while to get to post-transplant. She is alive, which is something we appreciate day to day since there will be tremendous risk for the rest of her life. It is a fantastic positive boost and memory for her to go into surgery and recovery with.

Con's to going now, verses waiting until after transplant: The BIG one: We have to make her inactive the week we go, risking that a heart might have come available in those 7 days. (we wouldn't know) Shes still pretty young, and going years from now can lend a whole new appreciation for both her and PJ.

We prayed about it. Talked to unbiased people about it. We didn't want the decision to be out of selfishness or haste. This is a once in a lifetime opportunity for Gabriella, and yet we have to make the decision FOR her. Of course, if we asked her, she'd be ready to board a plane tonight for Disney World, so we kept our hesitations to ourselves as we made our decision. Yesterday, I contacted our wish team and told them we were still on board. The more we thought about it, and all the positives and negatives to both aspects, we decided it was best to not let opportunities pass us by.

God is going to provide the perfect heart for Gabriella. We have been so obedient to Him, that we have faith in knowing he wouldn't let us make a decision on our own accord if it was going to prevent Gabriella from getting that heart he has already chosen. We feel at peace with moving in with my mom and going on her Wish trip, only the peace God can give us. I feel we are obeying Him, and will continue to depend on His word, even if it changes the plans we already have in motion.


Corey~living and loving said...

Kristi, each and every post makes me teary. I'm in awe of your faith, and ability to write out your thoughts so coherently. I am thinking of you all daily, and have G on prayer chains.

Jules said...

Kristi, it sounds like such a hard process making decisions for your family. I am so glad that things are falling in to place with moving/relocating. You guys are in my thoughts and prayers all the time!!!