Baby Parker's Life-Saving Surgery
Donation protected
It’s something that always happens to somebody else until it happens to you. This is that one day when your whole world changes.
Parker is my precious 4-month old grandson. He is happy, adorable, everything a baby is supposed to be, and everything you wish for.
Monday (4/8) Parker went for his 4-month check-up and his pediatrician expressed concern that his head was way over the percentile for babies his age so they ordered an ultrasound for the next morning.
Tuesday (4/9) Our fears confirmed that the excessive swelling was caused from Hydrocephalus, water on the brain. Parker was immediately transferred to St. Francis for a MRI to determine the cause. That afternoon the resident doctor came bearing the dreaded news…there was a 3 cm mass in the center of his brain causing the blockage. As a mother this news is devastating. To watch your own child cradle her baby crying while begging for something different is an experience you could never imagine and I pray you never have to. Our world was turned upside down but Parker’s world remains the same. He doesn’t know anything is wrong and we will continue to be strong through any adversities for him. After a second consultation late that night with a neurosurgeon we learned that this could be a mass or a vascular formation. A more detailed MRI would be needed to determine the next step. Both instances are extremely rare and life threatening but treated completely different. We would be required to transfer to a children's specialty hospital, but only a few in the country would be able to address either situation.
Wednesday (4/10) I arrived at the hospital by 9 am for the scheduled CT scan. Plans had changed. After the neurosurgeon consulted with Houston and Children's Mercy in Kansas City, they decided to life-flight Parker to a specialty hospital for further testing. The flight team immediately assembled in Kansas City and the Medevac plane arrived to Wichita at 1:30 for transport. As my beloved daughter and precious grandson were loaded on the ambulance that would take them to the airport, my heart sank. They arrived safely in KC and a MRI with contrast and sedation was immediately performed. In order to reduce the risk of brain damage, Parker was admitted to PICU where a temporary drain tube was placed in his brain to relieve the pressure of the fluid that was building up. Late that night we received more devastating news, the mass in the brain was determined to be a vascular malformation. Once again our world was shaken, but throughout it all Parker continued to smile and laugh, capturing the hearts of everyone he met. Parkers world remained the same.
Thursday (4/11) We (Autumn and Zach) had a difficult time because Parker could only be held 4 times that day for 30 minutes at a time due to the risks with the external drain tube and pressure of the fluid on the brain. Late that afternoon we were finally able to meet with the pediatric Neurosurgeon. He explained that the malformation appeared to be the Vein of Galen located deep in the center of the brain where an artery from the brain meets with a vein to return blood to the heart. Typically, capillaries reduce the flow from the artery into the vein, without them the vein is unable to handle the pressure from the artery causing the vein to balloon, resulting in extreme risk of stroke or hemorrhaging. The doctor explained the 3 cm mass was obstructing the drainage of fluids and it would require surgery. A procedure called an ETV was scheduled for the next day. The surgeon would go through the top of the brain, through the hole where the temporary drainage tube currently existed and proceed to the 3rd ventricular to poke a hole in the membrane to create a new way for the spinal fluid to drain.
With the ETV surgery it has to work at 100% for it to be considered a success. If it is working at 99% it’s failing because the 1% left of the spinal fluid will build back up in his head. It was difficult to sit in the room waiting for our baby to come out of surgery. After an hour and half the doctor came out to tell us that Parker is doing well and the ETV had a nice flow of fluid and seemed to be doing well. However, we are unable to tell if its working at 100% until time has passed and they can see if there is fluid building back up again. Once again we are in waiting game hoping things work out in our favor but it is unknown of what the future holds. With that surgery complete Parker was able to come out of the PICU and into a standard room for monitoring. After 24 hours of good vitals and a happy baby, they let Parker go home.
However our journey does not end there.
Wednesday (4/17) We headed back to Kansas City, this time to KU Medical Hospital to meet with a specialist doctor who would be treating the Vein of Galen Malformation. This condition is so rare that there are only a handful of doctors in the world who can treat it. This doctor told us one thing that no parent wants to hear, this condition is very life threatening. The surgery is a high-risk procedure that is life-threatening, but it’s riskier to not do it. In order for the doctor to know how to proceed with treating the Vein of Galen, he will have to perform an angiogram in order to see how the blood is flowing. Parker’s brain and the Vein of Galen are competing to get what they need in order to survive. The blood flow to the Vein of Galen needs to be shut off and re-routed. The doctor may be able to take care of in one step, but may have to do it several times over the course of time.
Monday (4/22) Our baby will go in for a very rare surgery to treat the Vein of Galen. Our hope is that Parker’s body has already started to shut blood flow off to the Vein of Galen and the doctor won't have to do much at this point. The other scenario is that while doing the angiogram, if the doctor sees that there is blood flow to the Vein of Galen he will have to use a super glue like substance to embolize the Vein and cut off the blood flow.
This is one of those situations where you hope and pray for the best possible outcome but you have to prepare yourself for the worst. When you become a parent you think of all the things you are going to do with you baby like go to the zoo, celebrate their first holidays, watch them learn new things, and enjoy your new little family. You never plan for surgeries, hospital stays, and life threatening conditions. Our worlds were turned upside down with a routine check-up.
Since the first appointment on April 9, Autumn has had to take an extended leave of absence from her job to focus on taking care of baby Parker. Zach is working overtime to make up for many missed days and more to come. They have had several hospital stays, travel expenses and appointments up until this point and we know that there will be countless follow-up visits with the neurosurgeon and the specialists in Kansas City. Since we are only at the beginning of Parker’s journey, we are unsure of how burdening the medical expenses will be when they start rolling in.
Please send prayers and all your positive thoughts and blessings for Parker, his parents and the surgical team.
I'm praying that together, we can help lift this financial burden so Autumn and Zach can focus on being strong for Parker. And I hope that through our help, they will feel the immense love of so many surrounding them.
Anything you can give would be amazing. Please feel free to pass this on to anyone you feel would want to be a part of this fight. Let's cheer on Team Parker and lift them up with all we have!
Thank You and God Bless.
Love,
Parker's Mimi Amy
Parker is my precious 4-month old grandson. He is happy, adorable, everything a baby is supposed to be, and everything you wish for.
Monday (4/8) Parker went for his 4-month check-up and his pediatrician expressed concern that his head was way over the percentile for babies his age so they ordered an ultrasound for the next morning.
Tuesday (4/9) Our fears confirmed that the excessive swelling was caused from Hydrocephalus, water on the brain. Parker was immediately transferred to St. Francis for a MRI to determine the cause. That afternoon the resident doctor came bearing the dreaded news…there was a 3 cm mass in the center of his brain causing the blockage. As a mother this news is devastating. To watch your own child cradle her baby crying while begging for something different is an experience you could never imagine and I pray you never have to. Our world was turned upside down but Parker’s world remains the same. He doesn’t know anything is wrong and we will continue to be strong through any adversities for him. After a second consultation late that night with a neurosurgeon we learned that this could be a mass or a vascular formation. A more detailed MRI would be needed to determine the next step. Both instances are extremely rare and life threatening but treated completely different. We would be required to transfer to a children's specialty hospital, but only a few in the country would be able to address either situation.
Wednesday (4/10) I arrived at the hospital by 9 am for the scheduled CT scan. Plans had changed. After the neurosurgeon consulted with Houston and Children's Mercy in Kansas City, they decided to life-flight Parker to a specialty hospital for further testing. The flight team immediately assembled in Kansas City and the Medevac plane arrived to Wichita at 1:30 for transport. As my beloved daughter and precious grandson were loaded on the ambulance that would take them to the airport, my heart sank. They arrived safely in KC and a MRI with contrast and sedation was immediately performed. In order to reduce the risk of brain damage, Parker was admitted to PICU where a temporary drain tube was placed in his brain to relieve the pressure of the fluid that was building up. Late that night we received more devastating news, the mass in the brain was determined to be a vascular malformation. Once again our world was shaken, but throughout it all Parker continued to smile and laugh, capturing the hearts of everyone he met. Parkers world remained the same.
Thursday (4/11) We (Autumn and Zach) had a difficult time because Parker could only be held 4 times that day for 30 minutes at a time due to the risks with the external drain tube and pressure of the fluid on the brain. Late that afternoon we were finally able to meet with the pediatric Neurosurgeon. He explained that the malformation appeared to be the Vein of Galen located deep in the center of the brain where an artery from the brain meets with a vein to return blood to the heart. Typically, capillaries reduce the flow from the artery into the vein, without them the vein is unable to handle the pressure from the artery causing the vein to balloon, resulting in extreme risk of stroke or hemorrhaging. The doctor explained the 3 cm mass was obstructing the drainage of fluids and it would require surgery. A procedure called an ETV was scheduled for the next day. The surgeon would go through the top of the brain, through the hole where the temporary drainage tube currently existed and proceed to the 3rd ventricular to poke a hole in the membrane to create a new way for the spinal fluid to drain.
With the ETV surgery it has to work at 100% for it to be considered a success. If it is working at 99% it’s failing because the 1% left of the spinal fluid will build back up in his head. It was difficult to sit in the room waiting for our baby to come out of surgery. After an hour and half the doctor came out to tell us that Parker is doing well and the ETV had a nice flow of fluid and seemed to be doing well. However, we are unable to tell if its working at 100% until time has passed and they can see if there is fluid building back up again. Once again we are in waiting game hoping things work out in our favor but it is unknown of what the future holds. With that surgery complete Parker was able to come out of the PICU and into a standard room for monitoring. After 24 hours of good vitals and a happy baby, they let Parker go home.
However our journey does not end there.
Wednesday (4/17) We headed back to Kansas City, this time to KU Medical Hospital to meet with a specialist doctor who would be treating the Vein of Galen Malformation. This condition is so rare that there are only a handful of doctors in the world who can treat it. This doctor told us one thing that no parent wants to hear, this condition is very life threatening. The surgery is a high-risk procedure that is life-threatening, but it’s riskier to not do it. In order for the doctor to know how to proceed with treating the Vein of Galen, he will have to perform an angiogram in order to see how the blood is flowing. Parker’s brain and the Vein of Galen are competing to get what they need in order to survive. The blood flow to the Vein of Galen needs to be shut off and re-routed. The doctor may be able to take care of in one step, but may have to do it several times over the course of time.
Monday (4/22) Our baby will go in for a very rare surgery to treat the Vein of Galen. Our hope is that Parker’s body has already started to shut blood flow off to the Vein of Galen and the doctor won't have to do much at this point. The other scenario is that while doing the angiogram, if the doctor sees that there is blood flow to the Vein of Galen he will have to use a super glue like substance to embolize the Vein and cut off the blood flow.
This is one of those situations where you hope and pray for the best possible outcome but you have to prepare yourself for the worst. When you become a parent you think of all the things you are going to do with you baby like go to the zoo, celebrate their first holidays, watch them learn new things, and enjoy your new little family. You never plan for surgeries, hospital stays, and life threatening conditions. Our worlds were turned upside down with a routine check-up.
Since the first appointment on April 9, Autumn has had to take an extended leave of absence from her job to focus on taking care of baby Parker. Zach is working overtime to make up for many missed days and more to come. They have had several hospital stays, travel expenses and appointments up until this point and we know that there will be countless follow-up visits with the neurosurgeon and the specialists in Kansas City. Since we are only at the beginning of Parker’s journey, we are unsure of how burdening the medical expenses will be when they start rolling in.
Please send prayers and all your positive thoughts and blessings for Parker, his parents and the surgical team.
I'm praying that together, we can help lift this financial burden so Autumn and Zach can focus on being strong for Parker. And I hope that through our help, they will feel the immense love of so many surrounding them.
Anything you can give would be amazing. Please feel free to pass this on to anyone you feel would want to be a part of this fight. Let's cheer on Team Parker and lift them up with all we have!
Thank You and God Bless.
Love,
Parker's Mimi Amy
Organizer and beneficiary
Amy Heggestad
Organizer
Newton, KS
Autumn Jackson
Beneficiary
