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Thursday, April 13, 2017

Baggage

I forgot I hadn't updated here about Addie's cardiology appointment. We saw Dr. Ikemba on March 30th for a checkup after Addie's cath. I cannot tell you enough  how amazing Dr. Ikemba is. She is kind, funny, empathic, and gives the best kind of hugs. Her bedside manner is also one of a kind. She called me before Addie's appointment and wanted me to know what a beautiful job Dr. Nugent had done with Addie's stent. She also wanted to calm any fears we had. She is the type of doctor that calls, and calls again. She cares. About Addie and us.

Addie had an Echo, x-ray, and had to wear a holter monitor home. Dr. Ikemba wanted to see blood flow in Addie's left pulmonary artery. That's the one that Dr. Nugent stented. She had blood flow there, and that's really all Dr. Ikemba cared  about. She mentioned that Addie was now pretty much a straight forward Fontan. Sounded good to me. Addie's x-ray looked good. All her coils, sternal  wires and stent lit up on the X-Ray are a reminder of all she's been through. It's really crazy to look at.

Addie's holter was also normal."Notmal, normal, normal," said Dr. Ikemba.  I'd forgotten this, but the way that Addie's heart is looped (to the left) makes her more prone to  heart block. This requires a pacemaker, and sometimes they put pacer wires in at the time of the Fontan in preparation for a pacemaker.  Addie shows no sign of heart block. Thank goodness. Addie wanted nothing to do with the holter though, and she was really embarrassed wearing it. I think this is the first time I have ever seen her truly embarrassed about something. This is the stuff that is really hard for me. I tried to make it seem like no big deal and we even got a cool little side purse she could put it in so no one could see. Luckily it was only 24 hours, and she didn't have school that Friday. I was really sad that Addie had a hard time with it.

We also learned that Addie has bronco malacia. Finally! Answers for the wheezing we thought was asthma. Her bronchus is compressed, which we learned during cath. Dr. Ikemba wants us to see a pulmonologist, but she is hopeful this will get better as she gets bigger (more room).

Play therapy is going well. We went in for Addie's 3rd visit this last Wednesday and Addie loves Karen. She said, "She has the coolest toys!!!" She made some glitter pictures and they talked some about her surgery. Next week they are going to make a calming jar and a picture frame she can take to the hospital. She mentioned also bringing in some of the the equipment Addie will have at the hospital so she can kind of get used to that. I am hopeful that Addie is going to be better prepared for this surgery. I know there is no way we can prepare for everything, but we are going to do as much as we can.

Some days I feel so anxious about all this and some days my confidence rules. Some days I cry about watching my baby go through this and some days I have no fear. Depends on the day really. I've stopped getting a good night's sleep, and I think Scott has too. Fears start creeping in at night, and I think we both don't feel fully rested. I'm choosing happy, but I'm having a hard time enjoying the day to day stuff, and I'm ready to just be done with surgery and move on. I'm sure this is par for the course. Still stinks.

Prayers for my girl and us are appreciated.

Sorry for the errors. I typed this in the tiniest font on my phone. Ha.

Much love,
Camille



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