Theodora's first Easter included a helicopter ride to Children's Hospital early in the afternoon. She had two very bad coughing fits during which she was unable to breathe and was turning blue. (Once at home, once in the ER) They did note, as I did at home that there were some signs of seizure activity. But, that has not been confirmed by testing as of yet. She may have the beginning stages of pneumonia. We will keep everyone posted.
For those of you wondering about Theo's 1st hand surgery. Here is a picture. She is still in ICU and being monitored. We expect she will be a not so happy baby over the next few weeks, but we are so happy she is such a good fighter.
Theo just came out of surgery and is in recovery then on to ICU. They may let her come home tomorrow if all goes well. The Mexiletine, she is taking, is a miracle drug. She is one of 2 children with her unique condition that hasn't gone into cardiac arrest due to anesthesia. That is 2 children out of approximately 48-ish known cases. #dodgingbullets
Theodora's first surgery has been confirmed for noon on April 8th. Next week, we will be in Milwaukee for an appointment with the cardiac anesthesiologist, then one last check in with her electropysiologist (EP) at the Herma Heart Center. If we get the all clear, Theodora will have the first of three surgeries on her hands to repair the syndactyly.
With her underlying condition, there is the higher than average possibility that even with the all clear from the doctors and the beta-blockers she has taken since birth she will go into a 2:1 AV heart block ( http://bit.ly/1iEUUSP) under the anesthesia. Her EP has confirmed that he will be on hand for the first surgery in the event she has a cardiac episode.
On October 7, 2013 Theodora Elise Mills was born with an ultra-rare genetic condition; Long QT8 type 1, also known as Timothy Syndrome. She is one of approximately 30 children in the world with this disorder. At the time of her birth, she was given a life expectancy of 2.5 years. However, so much more time can be granted to her, with the proper medical team and treatments on her side. Timothy Syndrome is a disease in which the calcium ion channels, which regulate calcium intake at the cellular level, do not close properly. This allows too much calcium to enter the affected cells. While many systems in the body are affected by the excess calcium; the pancreas, heart, brain and dental development are the most widely affected. Theodora was born with structural and electrical abnormalities in her heart, which will require surgery, as well as syndactyly (webbing and fusing of her fingers and toes). She is scheduled for her first surgery in April. Following her surgery, she will be seen at the Mayo Clinic in Rochester, MN. In addition to the trip to the Mayo Clinic, Theodora has several specialists she must see locally. Her care, prescription therapy and medical equipment she needs will be life long, and often not covered by insurance, due to the rareness of her syndrome. All money raised will help Theodora's family meet the challenges of getting her to the Mayo Clinic as well as cover her medical needs through the 3-5 surgeries she will have prior to her first birthday.
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