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.......

UPDATE AS OF DECEMBER 10, 2019:
Hi everyone. I just wanted to update everyone. Our days have been tiring and each day blends into one another. As of right now, Nora has been breathing on her own with a HME cap over the trach. They did a scope yesterday on Monday 12/9 and her trach is better then previous scope but still is reddened and has some white patches. Her tongue is showing white patches also. Her upper Airway through her nose was difficult to view due to a lot of secretions. Therefore, the suspect fungal infection and sent a sputum culture#3. It is growing something, but the culture is not complete yet. They started her on a fungal antibiotic and broad-spectrum antibiotic now. We will see when results come back. Nora will still nee a sleep study as she dips in oxygen at night to 88,89 but goes back to 92. They are checking for central sleep apnea. She is having her G-tube placed today and may possibly need the vent when she comes back until anesthesia wears off but not sure I will keep everyone updated. We need to get her back on lovenox for anticoagulation after procedure and then continue the weaning schedule of methadone. We need to have a family meeting with neurology before we go to rehab. If anyone was wondering, we plan on going to children specialized in New Brunswick. Please continue to pray for Nora.  We need as many prayers as we can get because we feel helpless and not in control. We love everyone and appreciate everyone for their support.

UPDATE AS OF DECEMBER 25th, 2019:
Hi everyone, on December 25th, Nora was moved to children’s specialized hospital in New Brunswick. It is a rehab facility to help her with her cognitive, mobility, motor, speech and any other deficits. It is quite different from the hospital. Nora started crying the next day. She was becoming sensitive to her environment and sounds. We were thinking it was because of change of place and she didn’t know what was happening. Over the next couple days, we were having issues with her heart rate being high and breathing fast. Her therapies were being effected and they weren’t able to really work with her.  It was increasing and on Christmas day, her heart rate was at its highest 160-170. They sent her to RobertWood Johnson ER for evaluation. After the workup, she did not have any infection. No pulmonary embolism. Nora was having “sympathetic brain storming “. Sympathetic storming means repeated episodes where the body seems to go completely out of control. Her heart rate was fluctuating at very high levels, Sweating and breathing fast. Nora was placed in PICU and started on clonidine to help with the storming effects. We are planning on going back to children’s specialized hospital for rehab Monday. Please continue to pray for Nora to get better and heal. We need prayers to get through each day. We appreciate everyone and grateful. xoxo

UPDATE AS OF JANUARY 17th, 2020:
Good evening everyone, Sorry if it’s been a little while since I last updated. My days are consumed with Nora’s therapy schedule and then my family comes to visit at night. By the time Nora is settled in bed I am sleepy also.  My goal is to try to update every 2 weeks unless there is substantial improvement. With a brain injury, things can be slow and repetitive. After Nora’s visit to Robertwood Johnson Hospital we were able to get back to Rehab for Round#2. Since then things have been less stressful since her Heart Rate has not been elevated. Nora was having a difficult time with her nighttime routine and she was having trouble staying asleep. She was waking up every time they repositioned her or changed her diaper. She woke up every time we suctioned her too. Sleeping for me was very difficult and broken at this time. However, Nora has been able to get used to some things over these couple weeks and she is going back sleep when we change her or do things. Nora has been getting PT, OT, Speech and recreational therapy. She has been responding with local and generalized responses.  She has also tracked objects of interest (example Hannah Monatana, Music, therapy dog). The objects that she follows are specific. She has also answered Yes & No questions by moving the muscles that are used to say Yes and No. Her muscles are weak so its difficult to see but the therapists feel her muscles moving by holding her neck and they feel her muscles move. Recently Nora has had Casts placed on her legs and every week they will take them off and measure and keep increasing flexion to get her foot back to normal.  Her right foot will need 6 weeks and left foot 4weeks. After this process she will need braces for legs. Nora has also been using a stander 2 times a day and gets in the Chair. During Speech, she has been working on swallowing and wearing a speaking valve most of the day. Nora’s cough has gotten stronger and her muscles are getting stronger too. We are grateful that everyone is still thinking of Nora and praying. I believe that with everyone praying and hoping that she will keep improving. I enjoy everyone checking in on us and being supportive. It helps me stay on the positive path. Xoxo Love everyone

UPDATE JANUARY 28th, 2020:
Unfortunately, this update is not the easiest to write. Literally after I wrote the previous update, Nora went back to Robert Wood Johnson Hospital the next day. She was having heavy breathing and her breathing rate was in the high 30s to 40s. We tried everything and unable to get her rate to come down. We did xrays, blood gases, tylenol, albuterol treatment, started steroids, and changed her trach. That being said she was sent to the ER on Tuesday 1/14/20 and they were going to treat her for Pneumonia. Her rate did become better. Instead of 38 it was 28-30. It did get better, but it was brought to my attention that her x-ray showed atelectasis on the left and they looked at the cat scan from her previous transfer to the ICU. They told me she had narrowing of the left mainstem bronchus. I was never told this till now. I called her pulmonologist in NYU and had him speak with the pulmonologist here. A bronchoscopy was scheduled and done. Results were concluded that there is narrowing on the left and she has been compensating on her right lung and just got tired. They put her in the PICU and placed her on CPAP. This transferred to BIPAP because she had a leak around her Trach. All in all, she was unable to come off without her breathing heavy again. Further investigation was done to see if we could transfer her to another facility (CHOP, BOSTON, COLUMBIA, JOHN HOPKINS, CINCINATI, RWJ) for a balloon procedure and stent. However, we ran into some problems. We found out that Nora’s narrowing is in an area that is being compressed by her spine and the aorta and pulmonary artery. Therefore, she is not a candidate for stent. The only solution we have is to do another spine surgery to create less compression. This surgery is tentative for this Friday January 31 2020. I will update everyone as we go. Please pray for Nora to give her strength for another surgery and that we can get out of this dark tunnel of events so we can move on and get home. Words can’t even explain how our family feels. We just want to be home with everyone again. Thankyou everyone for your support and prayers. XOXO

UPDATE FEBRUARY12th, 2020:
Every post seems so difficult to write. Our journey seems exhausting and never ending. Anyways, Nora had her surgery and it went well. Her doctor seemed very happy with the space that was created. She did develop a Pneumothorax and needed and chest tube but after a week it was out. The doctor had to cut 6 ribs on each side to create movement of the spine. Nora started developing fevers about a few days after surgery. They found out it was a urine infection and another sputum infection. Therefore, antibiotics were started again.  A Bronchoscopy was done a week after surgery and then a Cat scan was done. It concluded that Nora is having Malacia in both lungs. Malacia is just weakness in the lower airway. So, she has a hard time keeping them opening. They increased her CPAP settings to 10 but kept her pressure to 5. We are working on sprinting trials to get her off the Pressure 3x a day. We will do another x-ray this Friday. Every week they are going to change her trach in hope to reduce the amount of infections. They will culture after the change and then they will do another Bronchoscopy on Tuesday. We are lost for words but please keep praying and checking in with us. The support is helpful. Xoxo love everyone.

UPDATE AS OF MARCH 28th, 2020
Hi Everyone,
Its been very long since my last update and I’m sorry. I have just not had the energy to write an update. Maybe I procrastinate cause the progress is slow and upsetting. However, We finally made it back to rehab for are 3rd attempt on March 3,2020. So far were doing good. From a respiratory standpoint, we have been improving a lot. Nora has been off the vent during the day going 12 hours with just an HME and room air. If anyone forgot what an HME is, its a heat moisture exchanger that provides tracheostomy humidification. They maintain thin secretions and prevent mucus plugs. At night she goes on bi pap till the morning. We went to the Pulmonologist and she was very happy with Nora’s progress. A x-ray was done and she said it looks good. She can start seeing the left diaphragm so that’s good. We now can extend the trach changes from 1x a week to every other week.
From a speech perspective, she is improving her swallowing and we are trying to get her to manage her own secretions. Her swallowing is getting faster but still delayed and needs more time. She doesn’t swallow completely. They have been doing the speaking valve for about 2 hours each day. One day she went 5 hours. As for PT/OT/Cognitive Nora’s Progress has been inconsistent. She has good days and bad. She has followed commands of moving her leg or arm slightly. She has also closed her eyes and answered some yes, no questions by moving her head down for yes and turning her eyes for no. However, Nora doesn’t always follow commands when asked. She gets distracted or overwhelmed with sensory stimulation. Sometimes she is just tired. We just started doing E-stimulation to her legs and arms. Hopefully that will bring more awareness from brain to extremity. I will update you how things go. We are not sure when our discharge will be because with the coronavirus the Outpatient facilities are closed. We will maximize our rehab benefits to get therapy for Nora until the places open up. In general, we have good days and bad. As a reminder it’s a long road of unknowing what Nora will and won’t do. Sometimes things look so confusing and we don’t know if she just startling herself. Her Dr is very close in starting Amantadine to hopefully work with the neurotransmitters. We just need to come down a little more on her clonidine.
Everyday Nora gets PT and OT for an hour. Speech 2 times a day. Rec therapy and Psych therapy. Hope everyone is staying safe in this crazy coronavirus time. I will update everyone soon. Please keep praying for Nora as she needs all the help she can get. Breaks my heart every time I think about what has happened to her. Please pray for us to as a family for strength to get through.

- Dara Decker

UPDATE AS OF MAY 6th, 2020
Hi everyone,
Finally, I can tell everyone that Nora will be going home on May 21, 2020. We are extremely nervous but very much yearning to be together. It has been 6 months and we just need to move forward with our journey. We will continue to work hard with Nora and hope to unfold more progress. We have made some progress but there’s still more to improve. However, only time will tell and we need Prayers for a miracle from GOD. There’s a lot of adjusting coming forward and figuring things out. Please continue to think of us and pray for Nora. Thank you for your support and prayers. xoxox

- Dara Decker