We almost made a trip to Duke yesterday morning. I was really scared about Claire’s wellbeing. She did the fast breathing all night Saturday night and slept til almost 8:15 am on Sunday. When she woke up she was very lethargic, still breathing fast, and I could feel her heart pounding. She was really hot and glassy-eyed. Her skin was a weird color where it made her scars on her chest and stomach look really white. I had not seen that look on her face since she was at Duke after her surgeries.
I was really scared. I knew Claire was in trouble some sort of way, just not sure how. We gave her some fluids and a breathing treatment while we tried to decide what to do. After that she seemed slightly better. So we took it hour by hour. As the day went on, Claire seemed to get a little better but still spent most of the day in my lap which is totally abnormal for our child. This weekend was the most I have held her since she was in the NICU! It’s so hard with a heart baby to know if something is going on with her heart or if it is something else. You just cannot overlook anything.
Claire’s color was really pale but her cheeks seemed to get pinker throughout the day. By last night, she was smiling in the tub a little and laughing at me singing Itsy Bitsy Spider. She has probably lost 3 or more pounds which on a 30 pound child is 10% of her body. So it makes her look really small now. Her size 5 diapers are basically falling off of her. She looks so sick.
We kept up with the breathing treatments and today is her last day of azithromycin. I even did the breathing treatments to her while she slept during the night and this morning. She still seems a little weak this morning, but when I dropped her off at my mom’s she was eating really well (raisins and doodles) and dancing to Baby Einstein.
But I did notice that while changing her diaper this morning that she has these little red dots all over. Not a whole lot but several on her legs, her belly, belly button, one on her chin, and then her ears are covered with them. It’s weird! I texted a picture to Dr. Rachel and also to the pediatrician. The pediatrician seems to think that since they blanche when we press them, they are probably a viral “rash” that sometimes comes out after fever or viruses. She said we may see more come and then they will go away. So we will watch them too.
Hard to see on her ear in the picture. They look pink but they are really red all around the outside of her ear.
It’s just been a long 3 almost 4 weeks. Claire is exhausted but she is such a trooper. Trent is finally feeling a little better but all the steroid shots he took are making his blood sugar way out of whack. Me – I am still hacking my head off. I took one of Claire’s breathing treatments this morning in hopes it might help me too.
Thanks for all of the prayers. Please keep them coming as we still don’t really know what Claire has/had and if it’s over or not.
Love,
The Scott Family
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