Nora Medical Bills and Ongoing Expenses

Wednesday, November 6, 2019 was the worst day of our lives. Our daughter, Nora Decker,
age 12, needed a complicated spinal surgery to repair a congenital defect that connected the skull
to the spine. In order to meet this goal, pins, screws, rods and a metal plate with a skin graft were
used to make the cervical spine stable. The surgery was successful, and they were able to make
the connection. The surgery was to last 7-9 hours, however, at the end of the surgery, things
turned for the worst. There was a complication that happened from a judgement made with
anesthesia. Now that a week has past, we wanted to share what’s happening.
We had to be at the Hackensack Meridian Hospital by 7 am for a 9:00 am start. So, my wife,
son, daughter and myself were up before 5am to make sure we got there on time. A discussion
with Anesthesia occurred to discuss my daughter’s extensive history and concerns. My
daughter’s surgery went very well in the operating room until they took her off of anesthesia
around 4:30pm. She woke up and was fighting with the Endotracheal tube, so the
anesthesiologist made a judgment to extubate her by pulling the air tube out. Our daughter has
extensive medical history, including asthma and sleep Apnea. With her history being involved it
makes her very high risk. The moment he removed the tube everything turned for the worse.
She had a bronchial spasm and her air way closed completely. The anesthesiologist could not
get the tube back down her throat and she went for 20 min without getting any air to her brain.
They were trying, but her stats went into the single digit’s multiple times throughout the 20 min
and her lungs started to fill with fluid. They had to put a trach in her throat and had to perform
CPR on her two times because her heart stopped. From there they had to bag her to make sure
she kept breathing She was put on a ventilator and given nitrous oxide so her stats would come
back up. When the doctors came out to talk to us, they were not sure if she was going to make it
through the night. This is the worst feeling a parent can feel. Last rites and reconciliation were
given by a priest.
At this point they wanted to put her on a full breathing machine called Ecmo to replicate her
lungs so her lungs and heart could start to heal but Hackensack does not have this machine for
pediatrics patients. Her pupils were also not dilating with light and this is a huge concern for her
brain. It was 12 am and we needed to transfer her to a hospital that had this machine. One option
was Columbia Children’s Hospital in NYC., but they did not have a bed, so they decided to
transport her to NYU Hassenfeld Children’s Hospital affiliated with New York Langone. The
transport didn’t get there from NYU Langone until 3:30 AM and we didn’t leave Hackensack
until 6am Thursday. She arrived to NYU Langone a little before 7 with my wife and I showing
up at 7am and finally in her room to see her at 8am. NYU used Thursday to learn about her and
see how she reacted to pulling back some of her meds which was 9 IV’s for different things. Her
pupils started to dilate with light at around 11 pm. Thursday night, they brought her for a cat
scan which came back normal. She has also moved her hands ever so slightly along with her
legs once or twice. On Friday, they put something in her nose and her face grimaced a bit
because she didn’t like it. This doesn’t sound like much but without full testing at least I know
her brain told her that something was in her nose and her face changed because she didn’t like it.
This is all still very slow steps with her still sedated but it shows reaction to stimulation. 
We are hoping to find out more information about her brain, heart and lungs in the coming
days, but it’s been an extremely long week. Both my wife and I did not get to sleep until we
were up for 42 hours from the initial surgery start time and are days have been devastating,
exhausting with lots of up’s/down’s.
With this tragic event we must figure out a new normal for right now with my son needing to
go to school along with my wife who’s not leaving the hospital and myself going back and forth.
Our family is broken, and we want our family to feel whole again.
Changes are being made with medications and tests are being done for the her heart, lungs
and brain. We have been informed that this is a long recovery with deficits that either can
improve or be permanent. Some of the issues found were that her lungs and heart are not
functioning normally and need to heal. Her blood pressures have been running high and she has a
severe infection in her lungs and blood clots in her extremities. She remains in a sedated
condition because she’s on a ventilator and neurologically limited. An MRI is being performed
to determine the area of damage to her brain. Nora seems to improve moving one step forward
and then one step back making it difficult for doctors to diagnose her damages. This tragic event
effected our family, finances, jobs, and a girl that went to middle school with A’s in her classes.
She loved ART and Dance. We can’t process how were going to manage on this long journey
going forward.


UPDATE AS OF NOVEMBER 14, 2019:
Nora had her MRI of Brain and unfortunately we received more devastating news.  The brain received multiple areas of damage.  However, until the swelling goes down and another MRI is performed we wont know what areas of brain are permanent damage and which can be improved with rehab. The doctor stated she will not be what she completely was. We are feeling helpless and broken as a family.  Please continue your prayers and thoughtful support.  We are very thankful and appreciative of all your generosity.  We don’t know how were going to manage this journey.......


UPDATE AS OF NOVEMBER 17, 2019:
I just wanted to update everyone that Nora’s Lungs are improving but her left lung is still alittle diminished. Her Heart has been improving on her echocardiograms. Nora was able to start tube feedings and she is tolerating her goal amount. She is scheduled to have a procedure on Wednesday in the OR for change the Trach because Hackensack Hospital put the wrong one in. They put an adult trach instead of a pediatric. They also want to make sure that they didn’t displace or fracture anything.  They are trying to wean her off her pain medication but Nora is so sensitive and withdrawing. She was having tremors and moving all her extremities and agitated. They are working on it. My number #1 goal is to get Nora off the ventilator. However, the weaning process is slow. So Sunday November 17 she was given a trail to breath on her own and she was monitored to see if her respirations were ok and if her oxygen dropped. Nora was able to go 3 hours with having good respirations, O2 and volume. She did get tired and they had to put her back on the vent to rest. Please continue to pray for Nora. We need more improvements.


UPDATE AS OF NOVEMBER 24, 2019:
The medical support team is weaning Nora off of her pain medication morphine.   She is doing well but having withdrawal like symptoms. They are trying to lower her dose every couple days. They tried spacing her, but she had trouble going more than 3 hours. She is still sleepy at times, and her brain needs more healing.  This is normal at this time.  She has been sprinting with breathing. Which means they have her breathing on her own with pressure support. Almost like Bipap/C-pap. She was able to go 10 hours on Saturday and for today they want her to go as long as she can handle and then they will put her back on the Ventilator. Nora Is moving her legs and arms with agitation.  Nora also sat up today for the first time for 12 minutes.  We are so appreciative of the support from everyone, the school system, the Old Bridge PTA, Meridian Health center at Raritan Bay, our family and friends and yes even those anonymous people.

UPDATE AS OF NOVEMBER 28, 2019:
Today is Thanksgiving Day and this day has not been our usual, we were saddened. We are thankful to have Nora with us today as we didn’t know if she was going to make it a few weeks ago. We were all together today and ended our get together with our family tradition of a family hug. Some things that changed over the last few days were that Nora is off the Vent. She is breathing on a trach collar with supplemental oxygen. Nora is getting Out Of Bed assistance by physical therapy to the chair each day and has increased the length of time in the chair each day. Nora is now able to sit up for 3 ½ hours. Nora struggles with agitation, temperatures and withdrawal from her morphine wean. They have switched her morphine to methadone and seems to be doing a little better. Nora is still opening her eyes and moving her legs. Hopefully soon she’ll be off the narcotics for a better idea of the deficits we need to work on. Thank you everyone for helping us through this time. All the support means so much to us!  Please keep with prayers coming.......

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Robert Tetzlaff 
Organizer
West Milford, NJ
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