Ava Szajnuk’s Sixth-Year Anniversary: Second Chance at Life
June 15th marks Ava’s sixth-year anniversary of her first cranial surgery during the summer of 2013. Today, also marks the first day I started to share our journey with our family and friends through emails. Six years later, we have shared our journey with all of you and we wanted to truly thank you for your continued support, love and prayers for our family. Much love, Gina
Born: June 4, 2007
Saved on June 15, 2013
Saved again on June 26, 2013
Saved again on July 3, 2013
Saved again on July 12, 2013
June 8th, 2019
Here is my first email to family and friends written on June 15, 2013.
Ava had cranial brain surgery today at Children’s Hospital of Wisconsin. They think Ava’s arachnoid cyst ruptured and there were new bilateral subdural fluid collections. The lateral subdural hygroma was causing severe papilledema, which could have caused blindness. They suggested operating on her immediately for the ruptured arachnoid cyst as well as the intracranial pressure. Ava’s sixth cranial nerve was being squeezed by the increased intracranial pressure, which gave her weakness in her right eye. She had double vision from the papilledema. She will still have the double vision for a while. Unfortunately, this will take several weeks to improve. The good news is that the pediatric ophthalmologist came by for the post-op follow-up. Her vision is back to 20/20 when it had been 20/60 and 20/40 previously because of the pressure. However, her double vision will still take time to get better.
She also had a lumbar puncture (spinal tap) yesterday. Her pressure was at 55. The normal pressure range is 20. They were able to drain the fluid for testing as well as to reduce her pressure to 27. They couldn’t take more fluid out at the time. They would have been putting her in danger. Her headaches improved immediately. Unfortunately, her vision did not and that is why we had the procedure done immediately to save the vision.
Ava is recovering in the ICU today. We have a MRI tomorrow to check for swelling, pressure, bleeding, etc. This will determine whether she will have any more surgeries immediately and/or how long we will stay here before being released; a lot of it depends on how well Ava responds post-op. There is a significant chance that Ava may need multiple surgeries in the future. They drained the subdural hygroma via burr holes rather than fenestration of the arachnoid cyst. She has a drain coming out of her head.
There was also a situation going on behind the scenes. They had given Ava two different medicines during the day that could potentially make her bleed more heavily during surgery. They had to call in the hemoglobin specialists to go over the risks of the surgery since she was given the two medicines. They “typed” her blood during the night before surgery. They needed to have extra blood available during the surgery if she started to bleed out. Fortunately, it wasn’t an issue.
If you have time to read the following, here is Ava’s story….
Ava had been having severe headaches since May 3rd. We were not sure if it was from hitting her head on a coffee table while playing with her babysitter or due to her autonomic neuropathy and the warmer weather.
I called her neurosurgeon on May 4th & May 5th. I was concerned about her headaches after hitting her head. We took her to the ER at Lutheran General on the evening of May 5th. They sent us home without even doing a CT scan. I called her neurosurgeon again on May 6th. I told him that they did not scan her in the ER the night before. He said to schedule a MRI as soon as possible. Unfortunately, we couldn’t get the MRI until the 10th. She was still in so much pain that I took her back to the ER at Lutheran General on May 8th. They gave her a CT scan that night and it was normal. They sent us home with Tylenol. We had her MRI done on the 10th. Her arachnoid cyst was stable. However, her headaches continued to persist. They gradually became more and more intense. I took her to the ER at Lutheran General again on May 17th. They sent us home.
On May 24th, I called Dr. Ruge and begged for help. He put us in touch with a new neurologist, Dr. Shah. His waiting list was through September. Dr. Ruge’s office got us in on May 28th. Dr. Shah met with us and put Ava on gabapentin.
I also reached out to Dr. Phil Fischer at the Mayo Clinic. He put us in touch with Dr. Kenneth Mack, neurologist. He had a waiting list through August. However, Dr. Fischer’s office got us in on June 3rd. We met with Dr. Mack. He put Ava on IV fluids, iron and Ativan that afternoon. Her headaches only improved for the evening. He took her off of gabapentin and started her on amitriptyline.
On June 4th, Ava celebrated her 6th birthday in pain. She did not even want to buy a birthday cake or open presents. We still have several presents sitting on our dining room table left unopened.
On June 5th, Ava was screaming all morning. We called Dr. Fischer and Dr. Mack at Mayo and asked for help. Dr. Mack met with Ava again. He didn’t have any suggestions. He felt that the amitriptyline needed time to kick in. Dr. Fischer called us on the evening of the 6th. We told him that Ava was screaming again all day and all night. His suggestion was to max her out on Motrin for five days as well as to continue the amitriptyline.
June 11th, 2013, Ava was up all night. She woke me up around 12:30a crying that her head hurt. She moaned and cried all night. I could not get her back to sleep. I gave her Tylenol at 3:30a. Her tummy started to hurt too. I got her to eat a few bites of cereal and toast at 5a. She finally fell asleep at 5:30a. She sat on her pink beanbag all day long. She didn’t eat. She didn’t walk. She screamed and moaned all day. We took her to the ER again at Lutheran General. We arrived there at 1:49p. The report lists Ava’s Visit Reason as “Headache; ha” It is listed in the report that Ava’s headache was a 10/10. She told them that she was nauseous earlier in the day. They put her on one round of Toradol, NS bolus and Benadryl. Since it didn’t make a difference, they encouraged us to take her home. This was the day that the doctor said, “Dr. Shah does not feel it necessary to do any more testing.” They sent us home on Tylenol. She continued to have 10/10 pain all night. She screamed and screamed all night long.
On June 12th, Dr. Fischer, our Autonomic Specialist at Mayo, wrote me the following email:
“I don’t have any magic to suggest beyond the 20 mg per day of amitriptyline and the oral fluids and the emergency department if/as needed. Unfortunately, it sounds like Ava has not pulled out of the vicious cycle of inactivity-poor sleep-poor intake-pain. Whatever “little” steps you can take toward normalcy along the way (even a gentle walk outdoors) will likely help re-set the neurotransmitter balance a bit.”
She became lethargic after we came back from Mayo. She stopped eating. She barely drank any fluids. Her pain was an excruciating 10…red on the chart of faces. She screamed all night and all day. It was the most heartbreaking experience of our lives….
One June 13th, we took her to the ER at Children’s Hospital of Wisconsin. We were hoping to have her admitted and scanned. They brought down their neuro doc. He wanted us to come back another day for a consult. We looked at him and said, “We are not leaving.” The ER doc agreed. He could not send us home. He said she was in too much pain. He admitted us for the night. Ava screamed like a wild animal all night long. They gave her the following pain medicine…in this order:
Toradol, Compazine, Benadryl, Valproic Acid, Valium, Valproic Acid
**None of the above took her pain away.**
At 4:30a, they gave her Morphine. She finally fell asleep for two hours. She had the following scans: MRI, MRA, MRV. She also had a lumbar puncture (spinal tap) yesterday. Her pressure was at 55. The normal pressure range is 20. They were able to drain the fluid for testing as well as to reduce her pressure to 27. They couldn’t take more fluid out at the time. They would have been putting her in danger. Her headaches improved immediately. Unfortunately, her vision did not and that is why we had the procedure done immediately to save the vision.
So, the long…painful journey for Ava isn’t over yet. She is still in a lot of pain. However, we do have answers and we saved her sight and most likely her life. Thank you to the doctors here in Milwaukee.
Thank you ALL for your continued support, love and prayers.
Much love,
Gina
June 26th: Ava had her second cranial operation. They put the external drain back in her head.
July 3rd: Ava had her cyst fenestration.
July 12: Ava had her shunt placed.
July 16th: Ava was released from Children’s Hospital of WI.
Shortly after Ava was released from the Children’s Hospital of Wisconsin, a rainbow magically appeared without rain the morning of July 19, 2013. Ava made a wish for her recovery and we told her it was the Angels welcoming her home. We call it Ava’s rainbow.
Barbara Wegner
July 19th, 2013
To Read Ava’s entire journey during 2013
February 15th, 2019
During the fall of 2013, I wrote about a few of the lessons I learned during the summer…
Listen to your gut
You know your child more than anyone else
Don’t take no for an answer just because they are wearing a white coat or scrubs
Pray to God
Have others pray to God for you
Open your heart to the generosity of complete strangers
You will be blown away by how much strangers can touch your heart
Ask other people about their story
Everyone has a story
If you listen deeply to their story, their gift to you is beyond what words can explain
Love your family
Love your friends
Love yourself
Breathe
Big breaths
Even bigger breaths when you feel like you are going to lose your mind
I can do hard things
We all can do hard things
Ava still struggles with pain and fatigue every single day.
She is still undiagnosed.
June 4th, 2019
2019: “Push Through” by Ava Szajnuk
Ava on Fox13 News for Undiagnosed Rare Disease Day on April 29th, 2019
October 13, 2013 : Ava’s very first article about her journey Before he joined Jazz, Justin Zanik first helped daughter by Bill Orem.
Utah Jazz National Anthem Buddies
RUN’s NBA Initiative
ABOUT RUN
RUN stands for the Rare & Undiagnosed Network. We’re a group of advocates, patients, families, researchers, and healthcare providers who share the same mission and vision: To empower rare and undiagnosed patients and their families with genomic information and community through advocacy, networking and support.
Contact information:
Gina Szajnuk (Zanik)
Co-founder and Executive Director
E: ginaszajnuk@gmail.com
C: (310) 883-4353
To Read: “What is the hardest part of being undiagnosed?” by Gina Szajnuk
To Read: “Undiagnosed is a Diagnosis” by Ava and Gina Szajnuk
To Read: The Szajnuk Journey