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Friday, December 30, 2011

MRI update from Matt

It's been a roller coaster week and we wanted to briefly update everyone on Ava's status.
One week ago today, I took Ava to the ER because she was too sleepy to eat, presumably because her seizure medication doses were so high that they were shutting down her brain. We thought she would be admitted, get rehydrated, have her medication doses lowered and she would soon regain some wakefulness.  However, as soon as her medications were scaled back, her seizures returned but although she improved in her ability to eat a little bit, she remained much sleepier than expected.
I pushed the team to repeat some of her testing, including the MRI of her brain.  She had that yesterday, and much to everyones' surprise and dismay, the results are dismal.  In addition to showing widespread malformation of the brain itself, several important regions appear to have been taken over by tumor (most likely a glioma).  The most important region is the upper brainstem, the region responsible for controlling wakefulness, eye movements, and the ability to suck.  It's now clear why she hasn't been waking up like we'd hoped.  What isn't clear is what this means for Ava.  To help her get nutrition while we figure things out, we had a gastrostomy tube placed today.  This tube goes through the wall of her abdomen and into her stomach to allow us to put her formula directly in when she can't drink it.  She had a tough time with the breathing tube and is being kept in the ICU overnight to watch her respiratory status.
Next week, she will undergo a brain biopsy to confirm the diagnosis, which will hopefully give us more information about whether treatment is even an option.  If they are right about it being a glioma, there is little they can do.  Fortunately, we believe in a God who can do all things! 


Jen Brodie said...

Sara and Matt,
I am so sorry to hear of this news about little Ava. I wish I lived in St Louis so I could be there for you. I know of another friend of mine whose daughter was diagnosed at 2 months old with congenital glioblastoma multiforme. Doctors told the parents there was nothing they could do and that hospice was their option. They sought a second opinion, and were able to have the tumor removed. Scarlett is just about done with chemo now, and is 14 months old. I hope that this gives you some hope for Ava as you wait for tests to be done.
Jen Brodie

Joel A. Lindsey said...

Matt & Sara, heavy hearts here. Lord, heal Ava with your merciful and mighty power. And deliver this family from the desert places.

We love you guys so much. Continuing to pray.

The Haydens... said...

Matt & Sara, our hearts are heavy with you, and yet your trust in our Lord Jesus encourages and inspires us. We are committed to lifting you and your girls up in prayer. Please keep us updated as often as you can! Chad & Sarah Hayden

Anonymous said...

We are praying for y'all! May God be with your whole family. We pray that He protects you and gives you peace. Our God is greater than all circumstances.
Stephanie, Jay, Judah Newton

Sue @ Laundry for Six said...

Sending so many prayers your way.

Anonymous said...

I am very sorry to hear this news. It is just awful. We are thinking about you and your family all the time, and sending all of our prayers, hopes and dreams.

Daniel said...

Praying with and for you guys.

Gabriel Taylor said...

You have our prayers. We will be praying for this beautiful little girl. I can't even begin to imagine what you are going through. But you are right; we serve a God who still makes miracles! Revelation 21.4.NKJV "And God will wipe away every tear from their eyes; there shall be no more death, nor sorrow, nor crying. There shall be no more pain, for the former things have passed away."

Anonymous said...

Praying for a miraculous healing for your precious little Ava. May God surround you with His perfect peace and strength for this journey.