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.
We love you, and Lucia. So thankful that God got in the way!
It is amazing to see you taking this journey and the amazing strength of God showing in you. We’re continuing to pray for your family and for Lucia, and for the little mitochondria in her little cells … every bit of her is precious.
thank you amanda!
Mi queridisima Almudena:
Gracias a Dios que siempre ha estado con ustedes para apoyarlos y cuidarlos, especialmente a nuestra adorada Lucia. Que Dios los Bendiga siempre.
Betty
Your sweet family is always in my thoughts and prayers! Your attitude is an encouragement to all of us!
Love and miss you!
thank you haley!
you and adam are constantly in my thoughts, sweetheart.
thank you johnny!
Lucia is going to have quite the journal of miracles to read through when she’s older! I, too, thank God for always being right there with each of you. He has given y’all such incredible strength and guidance and while it has been a hard year (I know that doesn’t even come close to describing it!), it has been amazing watching you and Adam and seeing His presence within you guys. That doesn’t make as much sense as it did in my head, but hopefully you know what I mean! I love y’all and pray that God will continue to show Himself to you and keep surrounding Lucia with angels to protect her!
thank you ashley…we love you too!
so proud to call you my sister.:)
ok seriously, who wouldn’t be? i mean, right?
i’m proud to call you and ashley my sisters too.
Our God is so good! We continue to pray for all of you!
isn’t it amazing how one very special little girl has brought so many big adults to their knees to bow before their very Maker and plead for His mercy, guidance and blessings to be poured out. can you imagine how the angels must be with Lucia all the time, knowing she is (through her circumstance) leading people to Christ over and over and over again. isn’t it amazing how He watches over her, loves her and gives us all reasons to rejoice over the work that He is doing in her life? we ALL are being strengthened in Him by praying over her! amazing! love you!
that is very very sweet kathy. thank you for reminding me that this circumstance is constantly causing us to cry out to Jesus and cling to Him…something i wouldn’t have done on a daily basis otherwise. love and miss you.