7.1.13

HEART UPDATE

On Thursday Lauren had the most concentrated appointment she's ever had before. Wednesday night, Matt and I noticed that she had a hard swollen bump on her incision that we about an inch long. It wasn't red or painful and she didn't have a fever but we know better than to think that we are doctors. We called the cardiologist on call who knew Lauren once I mentioned that she had ALCAPA even though he's never seen her and he assured us that it sounded alright but that she would be scheduled to come in the next day. Have I mentioned how amazing Children's Hospital is?

So Thursday morning we loaded Lauren up and headed off. She started off with some blood work to check for infection. I broke into a clammy sweat because Lauren's veins are terrible. It is so hard to get the needle into them and then they "slip away". That just means more pokes for the little girl. The nurse suggested that I sit with Lauren in my lap in front of the cartoons on TV and that was a genius move. It wasn't Tinkerbell but it was good enough. The assisting nurse had really thick black glasses and Lauren finds glasses hilarious so between the cartoons and the glasses she didn't even notice the needle going in! And the nurse got her vein on the very first try. Elysha was startled when we came out because she hadn't heard any torrential screaming.

Lauren's echo was next and she was pretty good through it considering that her most common nickname right now is Mrs. Wiggs (short for Mrs. Wiggles). We watched some Tinkerbell and then she was tired so she sucked on her fingers and played with my mouth (a habit that she has to calm herself but it is both painful - my poor gums - and embarrassing - it is super awkward in public or when you're trying to have a conversation. If only she would switch to a blanket or something for soothing).

After an EKG and her pacemaker check, Lauren's cardiologist came in and talked to us. She is super happy with how Lauren is progressing developmentally (no surprise since in just the last week Lauren has started crawling, sitting up by herself and pulling to standing). Lauren has gained almost one pound in the last two weeks (which is great at this age) so she is now at exactly the 15th percentile for both her weight and height. I guess the diet of butter and cream in everything is working. Dr. Escudero was so encouraged by the fact that Lauren hasn't had a single passing out episode that she feels it is now safe enough to increase two of the medicines that will help Lauren's heart reshape itself. Scariest of all, she thinks that now, with the passing out gone, Lauren doesn't have to come back for a check up until mid February. That seems so far away!

Lauren also saw the cardiac nurse practitioner, who said that her scar bump seems okay, and the cardiac surgeon who said the same thing. It is so nice to hear good news about something that we were concerned about. It seems that fluid is building up because there are some suture knots there that haven't dissolved just yet. We just have to keep an eye on it.

So here we go, no cardiology until February.

1 comment:

  1. Amanda!! That's the most amazing and scarey news all rolled into one!! Praise the Lord! I'll continue to pray for Lauren's continued recovery.

    ReplyDelete

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