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Wednesday, September 9, 2009

A little flickr of sunshine today

Today we had our monthly cardiology appointment with our Phoenix doctor. Typical echo, consult appointment.

The first awesome bit of news is Gabriella has gained almost a whole pound! She was 37.1lbs on August 26 at her Loma Lina clinic appointment when they told me she needed to gain some weight. They gave me a goal of 1½ pounds before our next visit to Loma Linda. Sure enough, we are almost there! We have a couple more weeks before we head back, so I'm hoping to surprise them with some more weight gain!!!!

Today's echo seemed to FLY by, and we were done before we knew it! We met with Dr. Alhadheri afterwards to go over the results. Stable. PRAISE GOD! Her last echo was 6 weeks ago, and every echo she's had has been "increased pressures and a bit more enlargement". Not this time! Everything is status qua, the same as 6 weeks ago. Heart function is strong, though it is still working way harder than it needs to. Oxygen levels are spot on. Everything looks great!

Everyone there was in agreeance that we should still fly with the Wish Trip. Seeing as how she STILL isn't listed yet, and it could be a few more weeks based on missing information and arrangements, and her health is in such great shape right now. She's stable, active and healthy (for the most part). After transplant she will be on medications, at risk with all those germie people and prone to one of MANY possible complications which could require oxygen or feeding assistance. And I truly feel today's stable report was God's way of giving us peace about going and having one last crazy fling all focused on Gabriella! After this trip and once she's on the list, I won't be leaving her side, we won't be leaving the east valley, and we will be conserving energy and health by staying 'home bound' all fall/winter, or until she gets her call.

On to the arrangements we are lacking, I am having a heckuva time finding a flight company or private pilot able to assist us in one way air transport. Being an 'on-call' situation is creating some difficulty. I have quite a few possible resources in the palm of my hands right now, and I'm praying a couple of them turn out to be useful. BUT if anyone knows someone that owns a plane, is located in Arizona, and wants to help with an on-call urgent flight situation, please have them contact me or give me their information. We need to be at Loma Linda in 3 hours from the time of the heart offer, and it will be either 2 or 3 passengers (depending on the pilots requirements). I am willing to reimburse for fuel and time, but these companies wanting to charge $60k aren't working for me.

God Bless everyone. I am going to float on this cloud of 'stability' for the evening and thank everyone for their prayers. I will never loose hope for a miracle.

5 comments:

The Simmons Family said...

It's good to hear she had a stable echo and the weight gain is fantastic!!! Talk with your insurance company about life flight. We have a case manager and they will pay 100% if Owen needs to get to a heart. Too bad the hospital is a no go on that idea.:( You might be able to work something out with the insurance to cover the costs.

Kristi said...

Andrea- I wish! I actually got my answer on that today from insurance. If it were a critical scenario, they would cover her flight. But not for transplant transport. It's all on us.

Mary Ellen said...

Praise be to God!

Anonymous said...

What if you made up a flyer about gabriella's situation and posted it at local airports, like Chandler, William Gateway etc. Those places have lots of small pilot owned planes. Maybe someone or a group of people would take turns being on call. I have friends in Yuma that have done this in the past, but i think they would be to far as it is an hour half to get here.

Unknown said...

Kristi what a pleasure to meet you and your incredible family. It would be a honor for Jet TEAM Inc to offer you our Lear Jet 55 to take all of you to California. I hope you do not mind the way we kind of took over but we wanted to involve every resource our aviation community could muster for all of you. We will talk soon and see you at the upcoming fund raisers!!!

The Gerber's
Jet TEAM Inc