Expansion #6 and first Exchange/Revision

Miriam did great this morning throughout the check-in process. She was excited and happy to head to the hospital (she’s been looking forward to it for weeks), and even tolerated the “B’air” warming gown better than ever before. In surgery, her doctor expanded her spine-to-rib VEPTR a few millimeters as usual and exchanged her rib-to-rib device on her side for a new larger one. He had told us he was planning to open up her large incision (from the initial placement) in order to remove the old rod, but while in surgery he decided to try a less invasive technique. He created small incisions near the top and bottom of the rod, disconnected the middle of the rod from its rib connectors, and used a chest tube to surround the rod and pull it out. He then used the chest tube to place the new rod and secured it to the connectors. He told us to expect soreness from all the movement around and under the tissue, but we’re grateful she does not have a new huge incision to heal.

 

She had a rough time in the recovery room (which is normal for her; morphine makes her cranky and itchy), but once she got to her own room and got her lunch she started feeling much better. Since 1 p.m. she has eaten three large meals, gone for two short walks, and visited the play-room for some art time [well, mostly art-directing Mom doing her work for her]. She has had some complaints of pain but no worse than when she has had to have her connectors re-positioned in the past. She will see Dr. Williams one more time in the morning, and as long as everything is clear we should be home by tomorrow afternoon. She will probably stay home from school for the rest of the week until she feels good enough to get off narcotics. In the past she has switched to regular Tylenol (alternating with Ibuprofen) in just a few days, but her doctor has warned we will probably have a longer recovery time this time around.

 

We have not updated in a while, so we should add that Miriam is in first grade now, and will turn 7 in January. She qualified to enter into the Talented and Gifted program at her school, so starting in the new year she will get to choose an independent project to research and present. She loves to create things; as soon as she comes home from school she runs off to the playroom to start drawing or writing another idea. She has lots of friends at school, but her best friends are still her sisters and her cousins. She continues to learn ballet and started in the higher level class this year (though she will be missing the next several weeks while she heals). The last six months she has been blessedly healthy and care-free, and she has had a lot of fun. Here’s an example: her grandmother made all three girls Powerpuff Girl costumes for Halloween. We’re hoping she’ll get back to playing with her sisters like this soon. Thank you for all your prayers and support.

12194765_10102111007351142_655314398302261744_o





Be Sociable, Share!

2 comments

  1. Penny Zent says:

    She’s a remarkable little girl. And she has remarkable parents! Your commitment to her since the beginning has been a testament to your faith in God and each other. You never wavered in your love. You guys are very inspiring!

  2. Grandma Mary Fairweather says:

    What an awesome team of amazing gifted medical personnel who are always seeking new ways to do their work with less invasive technique. This is prayers answered for this exchange! May she heal with no further delay! Miriam is able to trust because they have not disappointed her…
    So thankful right now!

Leave a Reply

Your email address will not be published. Required fields are marked *