Update-Tuesday 4/10-From Rain to Sun! · April 10, 2007
The skies over Little Rock are dark and raining today but it is bright and sunny in Brea's room! Today Brea's Prograf (anti rejection drug) level has come back in a more normal range and the transplant team is making plans for her to move to the Ronald McDonald House on Wednesday! She will still be coming here to the hospital several times per week for blood work, therapy and heart biopsies but it will be nice to be able to sleep through the night without nurses waking her up to take her blood pressure. Danny made the mistake of letting Brea look out the window for a while the other day and now she points to the window and wants to go out all the time. Tomorrow will be her first time breathing fresh air in almost 8 weeks as we walk over to the Ronald McDonald House. That sounds like no big deal but that is one stroller ride that I cannot wait to take her on! I can't wait to see her little face when she gets to go outside! The Ronald McDonald House is nothing fancy. We have a small room with two twin beds, a small chest of drawers, 2 small closets, a night stand and a sink and mirror but it will be home for now and we are thrilled to be going there.

Today the transplant coordinator got involved in trying to help us work on our insurance woes. She contacted the business office here at ACH and they are trying to see what else they can come up with. They are looking into drug programs, talking with a social worker at the hospital in Baton Rouge about any other programs that we might qualify for in LA, looking at what it would take to establish residency here in Arkansas and trying to help us navigate the murky waters of the Medicaid appeals process. It is amazing that I've been down there four times and spent countless hours trying to get some help but the transplant coordinator can make one phone call and get someone working on this for us within minutes. My faith has never waivered. I know that God will provide for us just as He always has but I must admit, it gets exhausting dealing with the financial details day after day. I know there has to be something out there for us, we just have to find it. My pity party is over now...thankfully God won't hold it against me for being human. Wink

Today the hospital social worker approached us about talking to the Associated Press. It seems that they are coming here to ACH to do a story on the health care crisis in Louisiana. ACH has been getting lots of patients from the Louisiana area since Katrina and somehow AP has gotten wind of it and they plan to do a story on it. It is our hopes that they will highlight the crisis that many families like ours faces when you are caught in the middle of making too much to qualify for aid but not making enough to dish out thousands of dollars a month on drugs and doctor visits. We signed the release to talk with them and let them use our information in their story so please pray that this will bring this crisis to the attention of politicians who care enough to make changes to help families when they do find themselves in this situation.

Today our transplant coordinator approached me about purchasing a small plaque from ARORA to send to Brea's donor's family to place on his or her headstone. It would be a small token of our appreciation for their gift of life to Brea. As I read the pamplet that would accompany the plaque my eyes filled up with tears. Just knowing that this family will have something tangible to hold and touch that will connect them with our family is comforting. We will be writing a letter to them that will be sent along with the plaque but what do you say to someone who has given you such a precious gift? There are no words to convey our gratitude and there are no words that will take away the pain of the loss of their little one. It will be up to them to contact us through ARORA if they so choose. I pray that they will when they are ready. I would love for them to see Brea's smile and place their hand on her little chest and feel their child's gift of life beating inside her. I would love to hug them and tell them how much we love them for their selfless act of kindness. Only time will tell if they are open to this and if not, then we will respect their decision. We will never stop praying for them or thanking God for the gift that we've received.

Goodnight from room 18 of the East wing of CVICU...hopefully tomorrow night's update will be from the Ronald McDonald House. Very Happy

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"On my way to get an echo on Monday, April 9th, 2007"
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