Update (4/12) A new lease on life!

There are no words to describe the last two days.  Brea was discharged from the hospital late Wednesday afternoon and as soon as I pushed her stroller through the door and into the fresh air she began to clap, kick her feet and laugh.  She was so excited to be outside.  Every time she gets near a window now she points to it and says “OUT”.  She was shut up in the hospital just shy of 8 weeks and now she wants no part of being inside.  When she finally passed out last night she slept GREAT!  There were no nurses to wake her up for vital signs and it was quiet and dark in our room.  It may be the Ronald McDonald House but to us, it was a palace last night that represented freedom from wires, tubes, beeping machines and nurses and doctors poking and examining her. 


Before leaving the hospital the staff gave her a little party to congratulate her on her new lease on life.  I tried my best to find the words to express our gratitude to the nurses and doctors for the excellent care that they have given Brea but all that came out was a simple thank you and lots and lots of tears.  I hope that each of every person that has cared for Brea knows in their heart how much we appreciate them and that we will never forget them.  This hospital is filled with caring, compassionate, loving people and it has been our honor to have gotten to know them.  Brea loved the party and I think the pictures tell a much better story than I ever could.


This morning we were up bright and early for outpatient appointments at the hospital.  Brea will be doing occupational therapy twice per week as well as physical therapy twice a week to regain her strength.  Today they evaluated her and her score indicated that she is presently at a 15 month old level.  I was thrilled because just 6 months ago when we brought her home from she wasn’t able to sit up or hold her head steady.  Tomorrow morning we will go for our first outpatient visit to see the transplant cardiologist and the week after next she will have her first heart biopsy to see if she is rejecting her new heart.  PLEASE pray for good results.


Today when I came into the Ronald McDonald House after Brea ’s appointment I saw a lady that I haven’t seen in about a month.  She is a Hispanic woman that passed out in the waiting area of the CVICU after learning that her baby was not doing well.  I had noticed her doing the rosary the night before she passed out and we had smiled at each other in passing but because of the language barrier we had never talked.  As the paramedics took her away, I handed her rosary to her and patted her hand and motioned that I would be praying for her.  When she recognized me today she gave me a huge hug and a great big smile.  She was able to tell me that her baby is having surgery in the morning and I was able to tell her that I would be praying for her but once again the language barrier kept us from really talking.  Smiles, hugs and a Christian symbol like the rosary are all universal and no other words were needed to know that she was my sister in Christ and I am hers.  Maybe in my spare time I will learn Spanish (ha ha) but until then I’ll just need to rely on what I already know…God’s love knows no prejudice and no words are needed to understand how comforting faith is in times of trouble. 


I’d like to thank the many people who have emailed, called or posted about programs that we might qualify for.  We are working with the business office here at the hospital to try to exhaust all of our options.  We’ve learned that the medicine programs (offered by the pharmaceutical companies that make the expensive medicines that Brea is on) have a cap of 40K so we won’t qualify for them.  Since Brea and I have lived in Arkansas for more than 30 days we will qualify for a program to help as long as we are here.  Once we return to Louisiana we will be back at square one.  It would be easy to get caught up in the worry but them I would miss the joy of seeing Brea simply enjoying life.  I’ve decided that this is so much bigger than anything I can handle so I’m just going to have to let God take care of it.  I’ll continue to pursue any and all options but prayer is going to be my plan of attack.  Please join me in praying about this.  I know that prayer is powerful and that God hears our prayers and answers them…seeing Brea leave the hospital was confirmation enough for me.

I've posted some photos from the 11th and 12th just prior to this post.  Enjoy!


Goodnight from the Ronald McDonald House where sleeping beauty has finally giggled herself to sleep.