thank you, friends, so much for praying and checking in on lucia yesterday. i’m sorry to just now be updating you! lucia didn’t have her MRI yesterday. it turns out that the doctor doing this anesthesia (an ICU doctor and not a pediatric anethesiologist) was surprised to find out that lucia had a mitochondrial disorder. it was not communicated to him via our other doctors mostly because this MRI was ordered long before we even thought she would be tested for mito dysfunction, but thankfully we kept putting the MRI off. it turns out that because of this mito dysfunction lucia can’t have the most common type of anesthesia (propofol) given for surgeries and other procedures. this doctor was planning on giving her the exact anesthesia that would have most likely stopped her heart because he was not privy to her medical issues. thankfully, we were adamant to let the nurses know that lucia was being tested for mito dysfunction and eventhough they didn’t understand the danger the ICU doctor himself understood and was shocked that this was not communicated to him ahead of time. he told us he would feel better if a pediatric anesthesiologist would administer lucia’s anesthesia since she is considered high risk. he also said to try doing the MRI another day while she naps and maybe she won’t have to be put under at all. he was very knowledgable of mitochondrial disorders and gave us good ideas and suggestions on how to go about her care in the future.
so, praise God that He is constantly watching over us and directing our steps. thank God the doctor was aware of the seriousness of it and listened to our concerns. adam and i both agreed that had the doctor insisted that the propofol was ok (without knowing it wasn’t) we may have second guessed ourselves and moved forward with the procedure.
praise God for literally caring for lucia each step of the way. yet another stone of rememberance for my heart to treasure.
yesterday we also received a third lab report on her muscle biopsy confirming what the other 2 tests suggested – that lucia does have mitochondrial dysfunction. our geneticist spoke to the specialist in Austin and he confirmed it as well. neither of them could confirm yet if this is the full blown progressive mitochondrial disease or if it means lucia’s mitchondria just don’t function at 100% capability. we may know more once we actually see the specialist in person – but there’s a possiblity we may never know how this will affect her in the long term. she’ll be starting a vitamin treatment this week that should help improve her mitochondrial function.
every conversation (especially lately) with a doctor gets me pretty down for about a day or two, but thankfully God is always there to pick me up and help me not just catch my breath again – but even dance, laugh and enjoy my precious family.
thank you to those of you who are willing to help catch my tears and offer a shoulder for me to lean on. i hope that i can be the same kind of friend to you if you were to ever need one.