Everyone has been bragging about how good Brynn looks despite her condition. The doctors and nurses really are amazed. Unfortunately, the harsh reality of her broken heart was brought to our attention once again tonight. Looks can be deceiving. She has been a happy little girl all day. I bathed her and washed her hair and put on a cute outfit this morning. She even took a ride in a big red wagon this afternoon twice around the unit. Our friend videotaped the first lap and even provided commentary! I'm going to try to download this onto her FaceBook page...Hearts for Brynn. Well, despite being happy all day she has had an elevated heart rate. This makes the doctors uneasy. I have been watching the monitor all day, and I too have had an uneasy feeling. It all reached a boiling point about 8:00 tonight. Blood was drawn, an x-ray taken and she had another echo performed. Brynn was given morphine and ativan to calm her, but her heart rate reached 217 beats per minute. I was so frightened, I almost screamed out to everyone to, "leave her alone!" Her blood work and x-ray came back normal, but the echo did not carry good news. It showed that her heart function was worse. The doctor said that her little heart is tired. You can't imagine the work load that tiny heart is taking on! Whenever she starts to cry, I immediately grab the binky and sweeties and start holding her and rocking her. I have literally worn out a rocking chair! I'm serious! It has started making popping noises! My knees will probably need replacing soon! That's OK Brynn, Mommy doesn't mind. :) In the end, her heart rate has come down and she is sleeping peacefully, but the doctors told me that if her heart rate continues to rise then she will need to be intubated. She has been intubated before, and it's not fun for her and it makes me so sad. She can't make any sounds, and I can't hold her. I can't bear to think of her not being able to be held! The bottom line is, she needs a heart, and she needs it soon. Please continue to pray for this miracle to happen. I know God will provide her with a heart, but I want to see her go into surgery smiling.
Love to you all,
Amy
Wednesday, February 24, 2010
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February 15, 2009
Hello everyone! Well, Valentine's Day has come and gone...we were hoping Brynn would have received a new heart on that day. It wasn't meant to be, but we won't get discouraged!
Brynn has had a busy day today. I discovered that there might be a problem with Brynn's feeding tube. Sure enough, the x-ray showed that it had migrated out of her tummy. That meant she would need it to be taken out and replaced. She did get very upset and her heart rate went up, but she calmed down and I just laid her down for a long night's rest!
If Brynn hasn't received a new heart within the next month, the doctors want to do another cardiac catheterization and plan for the Glenn procedure. It is a surgery to remove the B-T shunt, which she will ultimately outgrow. It will also upgrade her condition to a more stable one.
She is just over 11 pounds (!) and the doctors and nurses are so excited. One of her doctors said that her thighs are really filling out, but that she hasn't reached thunder thigh status quite yet!
I'm going to try to post some pictures, so stay tuned!
Love to you all,
Amy
Brynn has had a busy day today. I discovered that there might be a problem with Brynn's feeding tube. Sure enough, the x-ray showed that it had migrated out of her tummy. That meant she would need it to be taken out and replaced. She did get very upset and her heart rate went up, but she calmed down and I just laid her down for a long night's rest!
If Brynn hasn't received a new heart within the next month, the doctors want to do another cardiac catheterization and plan for the Glenn procedure. It is a surgery to remove the B-T shunt, which she will ultimately outgrow. It will also upgrade her condition to a more stable one.
She is just over 11 pounds (!) and the doctors and nurses are so excited. One of her doctors said that her thighs are really filling out, but that she hasn't reached thunder thigh status quite yet!
I'm going to try to post some pictures, so stay tuned!
Love to you all,
Amy
I love you and I am continuing to pray!! Hang in there Amy!! Love, Christy
ReplyDeletePsalm 91 (The Message)
You who sit down in the High God's presence, spend the night in Shaddai's shadow, Say this: "God, you're my refuge. I trust in you and I'm safe!"
That's right—he rescues you from hidden traps, shields you from deadly hazards.
His huge outstretched arms protect you—under them you're perfectly safe; his arms fend off all harm.
Fear nothing—not wild wolves in the night, not flying arrows in the day, Not disease that prowls through the darkness, not disaster that erupts at high noon. Even though others succumb all around, drop like flies right and left, no harm will even graze you. You'll stand untouched, watch it all from a distance,
watch the wicked turn into corpses. Yes, cause God's your refuge, the High God your very own home, Evil can't get close to you, harm can't get through the door. He ordered his angels to guard you wherever you go. If you stumble, they'll catch you; their job is to keep you from falling. You'll walk unharmed among lions and snakes, and kick young lions and serpents from the path. "If you'll hold on to me for dear life," says God, "I'll get you out of any trouble. I'll give you the best of care if you'll only get to know and trust me. Call me and I'll answer, be at your side in bad times;
I'll rescue you, then throw you a party. I'll give you a long life, give you a long drink of salvation!"
I love this, Christy!
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