Surgery Day for Expansion #2

Surgery went smoothly for Miriam this morning. Her throat surgeon checked her vocal cords and airway after she went under anesthesia, and to our great relief, everything looked clear and healthy. In the photo he showed us, there wasn’t even a sign of the redness caused by the reflux she was experiencing earlier this year.

After surgery, Dr. Williams told us that the rib-to-rib VEPTR on her side had definitely deformed the bottom rib where it was anchored, though he was not sure if the rib was actually cracked. This meant the device was no longer supporting her right side, and her chest had contracted significantly since her post-op check this summer. She was likely having a hard time getting enough oxygen in her lung in the collapsed space, which would explain her recent bouts of grumpiness and lethargy. Dr. Williams was planning on removing the long part of the VEPTR and replacing it with a smaller version, as it would need to attach to a higher and stronger rib this time. However, once he was in surgery he realized that the existing rod had already been extended, so he put it back to its original size and it was small enough to connect to a higher rib. This is great for two reasons: one, less new devices implanted mean less chance of accidental infection; and two, this device can be extended several times before it will need replacement. If Dr. Williams had needed to replace the device with a smaller model, it would likely have only been extended a few times before we would have needed to exchange it back to a bigger one (meaning another bigger surgery). After re-seating the device on the higher rib, he was able to expand it even beyond the capacity that Miriam had before the lower rib deformed. He also was able to extend the rib-to-spine device in the middle of her back by over a centimeter. Once Miriam recovers from the surgery, she should be full of energy again (because she’ll be full of oxygen)!

Dr. Williams tried a new dressing on Miriam’s wounds that places ice on the site and is supposed to help reduce the need for medication. This afternoon she has been uncomfortable, but with meds has at least been able to sleep. So far they are not allowing anything more than ice chips, and when she is awake she is hungry. She also loves the hospital’s system of letting the patient choose their meals off a menu and ordering over the phone, and she’s sad she can’t do it yet. :( Meanwhile, she’s already been given a treasure chest worth of toys and books from the various charities that take care of the kids here, and we’re looking forward to when she’s feeling well enough to play with them.

Thank you as always for your prayers and support. They mean so much to her and to us.

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  1. Dawn Erina says:

    Godspeed Miriam. God bless your entire family.
    With Much Love,

  2. Kelly Haskins says:

    Sending prayers your way – thank you for this update. Hugs to Miriam from all of us!

  3. Grandma and Grandpa says:

    We are so thankful for all this good news. Praying for your healing now… Thanking God ahead of time!

  4. The Dreesens says:

    Love you, Miso! You are one tough cookie. Feel better soon.

  5. Lisa Cimino says:

    Glad the surgery went well and hoping Miriam is feeling well real soon. God bless you guys! Proverbs 3:5-6 “Trust in the Lord with all your heart and lean not on your own understanding. In all your ways acknowledge Him and He will direct your paths.”

  6. Brandi says:

    Our prayers are with you all. Such good news. Peace to all

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