Day 806: #SDRChangesLives

Today was the day! A day we had been dreaming about for the past year, but in our prayers: a day we had dreamed of since we received Madison’s diagnosis when she was 13 months old – we had always been looking for something more to help Madi have a chance at life pain free and spasticity free. Dr Park was our answer and Madi had her surgery with him today.

Madi woke up bright and early and went straight from her pj’s in bed to the van. She arrived at the hospital at 6am to check in. Once she went into her room she was greeted by many doctors and nurses who were on her team for the day . She said her “see ya laters” to the family and then after picking the flavour of her mask Mommy walked her into the OR. Mommy stayed until she fell asleep.

Madison was in surgery with Doctor Park from about 7:30am-11:00am. He said she did very well and is happy with the outcome. Madison woke up at around 11:00 and then fell back asleep. When she woke up a second time she was a combination of scared, confused and agitated. She wanted out of bed and to get off her back. She has to stay flat on her back for three days. It took 3 adults to hold her down. She cried hysterically for over an hour trying to rip off every cord possible. They decided to try a few different sedatives to calm her down. They tried three different things that seemed to calm her but also made her breathing much slower. She ended up staying in recovery much longer than anticipated so they could monitor her breathing. They were able to get everything under control and comfortable and she is now in the room she will be in until Sunday. It wasn’t the best reaction to the anaesthetic but very comparable to other children’s experiences. She has woken a few times with leg spasms (normal from the surgery) and had her first cup of apple juice and some crackers. She has been sick once but is mostly sleeping. When briefly awake, the things she has asked for are: Skye stuffie, purple iPad, a bagel and apple juice.

Thank you everyone for all the messages today it’s been incredibly supportive!

6 thoughts on “Day 806: #SDRChangesLives”

  1. The Higgins Family has been following “Madi Moves” for many months now. We were saying our prayers for all of you today. So happy that Madi is through this part of her journey.

    Peter and Ann Marie send love and prayers to you all. Hugs to Steven and Mimi. Xo


    Peter J. Higgins, B. Arch OAA MRAIC

    Peter Higgins Architect Inc. 124 Merton Street, Suite 204 Toronto, Ontario M4S 2Z2

    Office – 416.481.6229 Cell – 416.726.3773 Fax – 416.481.8084

    Sent from my iPhone



  2. Hang in there Katherine, James and the rest of team Madi in St. Louis. It’s going to take a lot of strength to keep Madi down, but it’s only for 3 days. We’ll keep our positive thoughts and healing vibes flowing down there. Love to everyone.


  3. What a brave little Angel! Sending Madison and all of you my love and prayers. All will be well xoxoxo


  4. Bless this little brave soul and give her parents and families the courage and patience to continue their journey of hope and healing. Thank you for the skills of all the medical people involved.


  5. Thinking of you guys today sending lots of LOVE and prayers for a healthy speedy recovery for Madi! xxx Neinstein family


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