I just met with the doctor and the echocardiogram this morning showed her shortening fraction to be 5.5% (Last Tuesday it was 15.8%). The echocardiogram is read by a cardiologist in the heart clinic but the head of the transplant team re-read it and she felt that there was no real change. I refuse to feel defeated by this. I choose to believe that God has a big plan for this child and His plan includes this ordeal that we are going through. I don't know why we were chosen to be here or to go through this but HE does. He knows the outcome and He knows the plans He has for her. (Jeremiah 29:11)
On a positive note, the transplant team got another offer of a heart for Brea but they decided not to take the heart because the donor had some type of bacterial infection.
There are a few other changes to report. They are decreasing one of her sedatives (Fentanyl) to try to resolve some of her tummy issues and he has discontinued her antibiotic for her UTI since she has been on it for 7 days now. He is also increasing her Captopril for her blood pressure (once again) from .5 to .7 in hopes of dilating the vessels enough so that the heart doesn’t have to work so hard to push the blood through. She is still on quite a list of drugs including: Versed, Fentanyl, Milrinone, Captopril, Baby Asprin, Heprin, Milk of Magnesia, Reglan, Zantac, Methadone, Adavan, Bumex, Diuril, Diamox and Miralax. The entire drug regiment will change once she receives her new heart but it will still consist of 10-12 drugs per day administered several times per day.
Brea had a great evening last night and was awake for quite some time. She played with a mylar balloon (which we learned are allowed here in the ICU) for about 30 minutes. I was able to catch a priceless smile on camera so I’m posting it for everyone to see! She has also had a great morning and has been playing with her little rubber duckies. By the way Brooke and Baker…she loves the little duck from the Mardi Gras parade. Thank you for thinking of your little sister when Mr. Dirk and Mrs. Danielle took you to the parade. It amazes me that even though she has tubes, wires and tape all over her little face that she can still muster up a smile. There are a few pictures and a video on the website if you'd like to see it.
Last night was a VERY sad night here for all of us. One family that I have spoken of before lost their child after a long battle with RSV. He was a transplant patient who received his new heart when he was only two months old and for almost three years he had lived a pretty normal life but for the last month or so he had been on ECMO and his little body began to fail in ways that even machinery couldn’t help. Another mother and I sat and prayed with his mother during the night and tears were shed by all those in the waiting room whether they knew the family or not. Please keep this precious family in your prayers this week as they prepare to say their final goodbyes to their baby.
This morning Dr. Seib and I were talking and he told me that this is a waiting game. We are waiting on healing or a donor heart. So, I will wait, I will pray and I will continue to put my faith in our creator. May this ordeal bring glory to Him and Him alone.
I’d like to say that I am so overwhelmed at the number of calls, emails, visitors, cards and prayers for our family. We could not get through this without our faith in God, our church family, our families and friends, the adoption community and our brothers and sisters in Christ. My heart is so touched by your outpouring of love and I thank you from the bottom of my heart for your continued support and prayers. I recently told a friend that I may be alone here in Little Rock with Brea during the week but your prayers comfort me and make me feel like this big world that we live in is a bit smaller. Please continue to pray for Brea, our family and the donor’s family.
Hug your kids a little tighter this afternoon. Life really can change in an instant…just ask one of the moms sitting here in the CVICU.
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