Ava has Aicardi Syndrome and sadly suffers from multiple seizures daily, in the form of infantile spasms.
Medical treatment has failed to stop the seizures and she continues to have a developmental delay.
Today, October 24th, CHOP Neurosurgeon Benjamin Kennedy, MD is performing surgery. The procedure is called a (R) Hemispherotomy; they're removing the part of her brain that has the abnormal brain waves and "disconnecting" the 3 bands that connect the Right side of the brain to the Left. The hope is that the L brain takes over for the R with intense rehab, likely beginning next week.
Ava went in for surgery at 7:30am, and Dr. Kennedy began the procedure at 9:50am. Anesthesia reported that she's doing well.
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The Charge Nurse updated Jordan & Coll mins ago. Dr. Kennedy and Anesthesia said Ava is doing very well, all vital signs within normal range!
It will be a couple hours before Jordan & Colleen can be with Ava, but so far she's doing great.
Please keep the Prayers coming.
Discussion with Dr. Kennedy
We just spoke with Dr. Kennedy and he was very optimistic. He said there were no surprises and Ava tolerated everything very well. He stressed that the coming weeks are crucial and she will face many “ups and downs” along the way.
Jordan & Colleen are with Ava now in the PICU. We will continue to update as Ava wakes up and recovers.
Thank You, everyone, for your kind words, thoughts and prayers!
She’s still pretty sleepy, but they’re stimulating her left side and she IS moving!!!!!
Temporary Paralysis was possible, depending on different variables faced during surgery.
Update from Coll & Jordan
Pretty good night.
She is a thirsty girl. After a brief fight with them they agreed to allow her water around 4 am.
Otherwise – resting easy. When she is awake she has sat up, she's handing out high fives, has said momma, Bobba, and her sound for "more".
Surgeon was extremely happy to see the amount of movement in her left arm and leg. Very promising and proves the left brain had already started taking over for the right.
MRI shortly to get an internal snapshot.
New Photos will be posted soon...
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No Seizures in 24 hours!
…Colleen added as of 7:15am Ava has gone 24 hours without a (witnessed) seizure!
Evening Update, 10/25
From Jordan & Colleen:
”Ava gets a GOLD STAR for today!
An early morning MRI indicated minimal cerebral fluid build up in the brain/head and the drain is functioning quite well.
She has readily accepted all fluids and this evening enjoyed a "normal" ketogenic dinner.
She is comfortable, and has continued to hand out high fives and gave very sweet hug to Colleen.
We could not be happier with progress and recovery. We've sat through the opposite of this with prior surgery, and are relieved to be on the positive side. Keep those prayers and good vibes coming.
Ava is certainly feeling more herself but also much more aware of the discomfort. Rough night but sleeping well this morning after a big breakfast!
She is reaching out and asking for "Momma" – wanting to be picked up. Hopefully soon.
During rounds this morning, more discussion on removing IV lines (from 5 down to 2 at the moment); and also a plan for allowing her to be held while not compromising the cranial drain.
A couple smirks and "Momma" help get through the tougher times! #AvaStrong
Rise & SHINE
Jordan & Colleen Update:
We met early this morning with Ava's surgeon. He, as are we, have been nothing short of amazed with her recovery.
She continues to be fever free; fevers being major concern for patients after brain surgery. Her pain is controlled and her personality starting to shine again.
Smiles and high fives from a happy girl than can now be held by mom and dad.
Better news is that the cranial drain will be removed today!
Her lack of "lost abilities" on her left side is suggesting she is not a candidate for the intensive inpatient PT that could have kept us here for a month if not more.
The sun rises with great news and outlook today!
It's one we will not soon forget.
Change in Scenery
Update from Jordan & Colleen:
Ava is doing great! Incision appearance and swelling are surprisingly mild as she continues to heal. The removal of the cranial drain yesterday, was a big step!
The steroids Have her a bit cranky and needy; summoning Colleen to her bedside for hugs as needed.
Her toys have made their way to the crib and the silence of the room is now broken up by the familiar sounds of Doc McStuffins theme song.
There are talks of moving Ava from intensive care to another floor and the reality of a discharge in the near future. Ava will require weeks of special care and attention at home – but it will be HOME.
Let us not forget – end of day today we will celebrate her 5th day seizure free! #AvaStrong
Up, up, and Away!
update from Jordan & Colleen:
Avas progress and healing continues to Go beyond expectation.
Yesterday was a struggle to steady sugar levels and deliver fluids, but with some help and convincing she is back on track.
Ava felt good enough to get "back to work" and was handling Animal Adventure emails as she does each day at home with dad on the keyboard in his office.
We remain seizure free.
Word is – we are coming home today!
New Outlook, New Chapter
We are on our way home!
We leave CHOP today with a bright outlook For Ava's future. We continue to pray for a continued seizure free life and further mental and physical development.
We now start our newest chapter as a family.
Thank you all for your prayers and support from around the world; miracles can and do happen.
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Fans reacted :
Diane Childress So glad to hear things are going well for Ava! Will continue to keep the Patch family in my thoughts and prayers. Hoping for a speedy recovery for Ava and a successful outcome! Thank you for allowing us to follow your journey.
Bonnie Pridgeon Praying for you precious daughter as well as her parents. Praying that God will guide the surgeons hands and give them the wisdom needed to care for her. Have also added her to our church prayer chain.
Pam Simpson Wishing continued wellness and a Happy Halloween to Ava, Colleen and Jordan ….#AvaStrong…. Sending hugs and kisses.
Joan Nelson Good morning, Signed in to see if there might be a new photo in the gallery. I especially like the one of Ava 'on' the computer! Plan to continue my prayers during Ava's rehab. Wishing your family only the best.
Lisa English Thank you for allowing us to be a part of your lives. You now have a prayer chain going all the way around the world. It is so great that you are doing so well and got to go home so soon. I hope you don't ever have to have any more surgeries ever. But if you do call on us and we will pray for you as much as we need to. Go home and have a seizure free life withl all your animals and that little brother or sister mommy is going to have. God bless your little family.
Christa Irish AvaStrong! So glad you were able to return home so quickly. Our continued prayers for precious Ava, her parents & entire family have been answered. May you have a restful night at home and continue to out perform everyone's expectations going forward! Much love from Wisconsin!
Christine Robillard I am so pleased on Ava's progress and thank you for the pictures my heart goes out to the patch family and for Colleen's family as well sending big giraffe hugs and wet kisses to this angel
Amanda Henslee Cline My family have you and yours in our prayers every second. Even though we haven't met we love you so much. God has special plans for you. Just look to the stars and know that my lil family are looking back at you. We are so thrilled you are strong and getting better everyday. We love you baby Ava! #AvaStrong Yours Truly the Cline-Vaughn family!
Judy Bernard So thrilled to see the sweet pictures of each of you holding Ava and comforting her. As you said, miracles do happen!
She will always be our (A)wakened, (V)ictorious (A)ngel. Thrilled you are able to head home so soon.
Pat Beebe So happy for all of you. You'll all feel so much better just being HOME!!! Our thoughts and prayers continue to be with you. My little Ava had me put a picture of your family as our screensaver so we would remember to always "ask God to make Ave get better real quick!" Safe travels!
Josie Wright Awesome news that she is making such great progress so quickly prayers being answered every minute with you lil AVA you are a true fighter an achiever Im amazed with your strength that you are showing us all. An getting to go home is a miracle in itself you heal so much faster an better being in your own home an bed an surroundid by all the family an friends. I bet Oliver an April an Tajeri cant wait to see your bubblely smile lov you baby girl Prayers still coming your way
Evelin Lindsay Little Princess may be going home?? This made my day! Safe travels and God bless you all. Continued well wishes, along with prayers for a successful recovery. Patch family, you are amazing!! These wishes come from Wichita Falls, Texas!
Elizabeth Rasmussen Sounds fantastic if you all get to come home. I always say you get mush better and faster at home. It will be a lot of work for awhile but soon you will have a routine. It's fantastic there now hasn't been those seizures. Sending my thoughts my love and my prayers to all of you from beautiful Denmark
Pat Collins So happy things have continued to progress in the right direction. Seizure free is the best news. God will co tinue to watch over Ava’s healing and march on. Ava is such a fighter and will always be #Avastrong
Deb Hhh Great news … I'm glad all is going so well and Ava's been seizure free for five days. God is great! Jordan and Collen and family you have a very special girl there.. She's a strong one! Hope she gets to go home soon . I pray for you Jordan And Collen that you have the strength physically and mentally to care for AVA . God Bless you all ! Hugs
Lee Buck So very happy to hear such a wonderful update! And particularly happy to hear about the continuing absence of seizures. Very best wishes for a continuing exemplary recovery… Ava is showing them all how to handle this surgery
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Please continue to support and prayer for little Ava:
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