|Today is Good Friday and it has been a good Friday for us indeed! We had a sleepless night last night. Brea was up about every 20 minutes fussing and crying. The doctor decided to do a chest x-ray and found an effusion (fluid). He paged the echocardiogram tech and had her come in and she did the echo around 6:30 this morning. Between the time the doctor paged the tech and the time the echo was done the fluid had disappeared! The tech turned on the machine and up on the screen popped a picture of a beautiful heart with all four chambers showing! I was so excited to see the picture that she printed a copy for me to keep. Before the transplant Brea's heart was so large that they couldn't see the entire heart on the screen at one time. They had to look at it in sections. What a way to start the day!
The fussiness and crying is probably a side effect to the steroids that Brea is on to surpress her immune system. It will probably last for the next 6 months but should get better as they cut back on the dose.
Today we moved across the hall to the East wing. This is the unit where the parents are the caregivers and learn to administer the medications at home. Before being transferred to this wing, her pulse/oxygen monitor was removed as well as the leads to the big heart monitor. She is now on a small portable monitor and she gets her BP, tempature, pulse/ox and respitory rate taken every four hours. This is also where they will work on getting her back on a schedule. It is nice to feel like the mom again instead of a helpless bystander.
Brea is making great strides in therapy everyday! She stood for a while today and even sat on the floor and played. She is drinking her bottles again like a champ but hasn't shown much interest in baby food today.
This afternoon Danny called and I held the phone up to Brea's ear for her to hear her Daddy's voice just as I've done since this ordeal began. It has been seven weeks since we've heard her voice except for a pitiful little cry that sounds like a kitten but much to our surprise she said "Dada". It was music to our ears! Since then she hasn't stopped talking! I think she has rediscovered her voice!!!
The nurse took us on a little tour of the East wing and Brea got a chance to wear her little mask for the first time for more than just a couple of minutes. We made a stop at the playroom and since there was no one in there, the nurse closed the door and let us play for a little while. Brea was a really good girl and kept her mask on and we washed our hands the minute we were back in her room. Brea got a chance to "drive" a Cozy Couple (Little Tykes car). She LOVED it and I was bummed that I didn't have my camera with me. She got a little sad when it was time to go so I think there is going to have to be a cozy coupe in our future when we get home.
I got an email from a friend this week that summed up Brea's beautiful gift of a heart perfectly. Someone had to die in order for Brea to be saved just as Christ had to die on the cross for us to be saved. I know that it was no mistake that Brea's transplant happened during this Holy time of the year. Afterall, God's timing is ALWAYS perfect. Thank you God for the gift of your son and the gift of Brea's new heart.
Before I sign off for the evening I'd like to ask you to pray for a sweet little girl named Jalisa. Jalisa got a Berlin heart yesterday and she is not doing well. She had an MRI today and it showed that she has had a stroke. There were no brain waves and it doesn't sound like they are giving the family much hope. Jalisa's mom and I have gotten to know each other over the past weeks since our girls stories are so similar (heart damage caused by a virus) and my heart is breaking for her tonight. God IS still in the business of miracles and I believe that with Him all things are possible. Please keep Jalisa and this family in your prayers. They are in need of a miracle.
Goodnight from the EAST WING (step down unit) of the Cardio Vascular Floor of Arkansas Children's Hospital.