Sunday, August 3, 2014

Cora Update

My only fear about visiting home, was that Cora would have some medical emergency and I wouldn't be near any of her doctors. I really feared that. I signed up for MyChart so that I'd always have access to her medical record and I set out on our vacation.

Would you know it, the first night away Cora pulled on her Mic-Key button! She pulled on it during the night so I had no idea what was going on until she woke up the next morning and I was getting her changed and dressed. Her pajamas were soaked with blood and drainage and my heart sank. Shoot! What do I do?! I took a few pictures of the button site and sent it to her surgeon, waiting for his phone call. I didn't know if I needed to take her in or not. In the mean time I taped several layers of gauze all around the button to stop the bleeding and drainage and continued on with the family reunion we were attending in Boise.

Dr. Chan called me and said it looked fine, the stitches were just irritating the skin and that's what was causing the bleeding. Had the stitches been taken out then she would've pulled the button completely out and I would've had to go to the ER. Cora was only pulling on the button because she's teething so she can feel it with her hands, tries to grab it and pulls it up to her mouth. Lance went to the drug store to get a pacifier clip, ace bandage wrap, and more gauze.

I slept by Cora that night so I could watch her. The next morning I woke up to the same scene - blood and drainage saturated her pajamas. I was shocked and did the gauze thing again that day. Later in the evening I had Lance help me change her dressings and clean it and then I found a fresh drop of drainage on her skin right next to the button. What?! Good news is, the tube extension was leaking, she didn't pull the button a second time, it was still the damage from her pulling it the first night. Lance helped me replace the tube extension and we also checked the balloon pressure that holds the button in place. It was low so I'm glad we checked it.

We now wrap an ace bandage around her every night so she can't pull on the button and we keep a pacifier clip on her shirt at all times. That way she can pull on the pacifier clip and not the button. I had 3-4 other incidents at Mom's house with the medicine port coming open at night, that was frustrating and made for lots of laundry.

Since being home we've had 4 doctor appointments last week and 2 more this week. I've learned the following:
  • 75-95% for length and weight (it's amazing how much she grew in one month's time, all thanks to her surgery)
  • Her heart is the same, no better and no worse
  • We can continue with solids, only introducing one new food every week. Yay!! Her allergist is an awesome doctor and all the skin tests were negative. She can have absolutely no rice or milk in any form.
  • Neuro follow up was pretty routine but he did tell us two things that were disheartening to hear. I'll expound on those later.
  • She's 8.5 months, still not rolling over or sitting up
  • VERY social and VERY smiley
  • Loves her brother

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