Lucy had a long and exhausting day, which means that we all had a long and exhausting day! After carefully orchestrating who was going to be where and when today, Drew and Lucy and I met at DuPont for appointments with cardiology and neurology. Lucy’s neuro referred us to this specific cardiologist because she has experience with patients with mitochondrial disease. It was a relief to Drew and I to learn that she was knowledgeable about mitochondrial disease and how that translates to the heart. Lucy has not shown sings of any obvious cardiac issues; however, she does have a tendency to drop her pulse ox at night when her body temperature lowers, and she also tends to have higher than average blood pressure. The cardiologist explained to us that these issues are most likely related to her autonomic nervous system dysfunction and told us signs to look for that would indicate possible cardiac concern. After discussing Lucy’s medical history, blood pressure, pulse ox, performing an EKG, and finally an echocardiogram we are thrilled to report that Lucy’s heart is HEALTHY! We were told to come back in a year for another check up:)
After our appointment with cardiology we went upstairs to have the leads placed on Lucy’s head for her 24 hour ambulatory EEG. We should have had this done next week so that we could have dressed her up as a mummy for Halloween. It took four of us to get all 28 leads super glued onto Lucy’s head, and than wrap her head in gauze. This was not an easy thing to have done for Lucy nor Drew nor I. In spite of all of the tests and procedures that Lucy has had done in her short life, it does not get easier to watch your child go through procedure after procedure. Somehow you do manage to find ways of coping so that you can continue to do what you feel is in the best interest for your child. It is not easy, tonight I am exhausted from trying to find ways of coping! We are hopeful that this test will give us some information as to what is going on inside of Lucy’s head. Hope for a good nights sleep so that tomorrow we wake up ready for another busy day.
She is so stinking cute even with her head wrapped in gauze!