End of Life Care for Ezra

Hello, I am Robert, Ezras Father, and as his parent this truly feels impossible.. but without any close family or friends who understand Ezras complex medical background I'm here to ask for help in a way no parent should ever have to.

Quick Story of Ezra's Life:
  Ezra had his 3rd open heart surgery at Lucile Packard Children's Hospital in Stanford 10/28/2016, everything was supposed to be great after, Ezra went home 12/04/2016 but had to be flown back to LPCH 02/08/2017 and had undergone MRI's, tests, heart-cath procedures, chest tube placements, and tons of medication only to discover that Ezra has Pulmonary Vein Stenosis (Disease), a rare and almost always incurable condition. On 03/23/2017 the medical team gave us the worst news imaginable, Ezra would be sent home with no treatment, no chance at getting better, and almost no time.. although the doctors cannot say how long Ezra has, they estimate that within 2 weeks to a month Ezra will require so much medicine to keep him from being in pain that his body will not be able to support his breathing. Unfortunately at that time we will no longer have his beautiful presence and will have to arrange a service for him and all that goes along with it.

(See Full Story at the Bottom)

*At this time in our journey we are not solely asking for donations, but also support, suggestions, guidance, and love; no part of what's to come is easy. If you have any recommendations that will benefit Ezra or his family please contact us.

Our goal in making this campaign is that we may be able to use a portion of the funds to give Ezra the opportunity to experience some things he loves in life before he cannot. Such as going to some local attractions like aquariums, dinosaur exhibits, Universal Studios, Lego Land or something similar that he may enjoy (as long as he can tolerate it and be comfortable). We would also like to provide Ezra with things he may enjoy at home such as indoor and outdoor toys. Fortunately Make-A-Wish is working on granting Ezras wish to go to the San Diego Zoo Safari Park as soon as possible and let him see his favorite thing, safari animals. Anyone who knows Ezra knows he loves hippos, giraffes, lions, and pandas! If you don't know Ezra, I'm really sorry you didn't get to know his beautiful and loving heart, he always makes you smile and feel loved.

Ezra's Full Story:
   01/22/2014 Was a beautiful day, Ezra was born on his due date and life couldn't have been better. Born full term, with all his prenatal appointments done as scheduled, we expected his delivery and home going to go just as well. 24 hours after Ezra was born, in the middle of the night, we got the terrifying news that Ezra was being flown immediately to Loma Linda University Children's Hospital because they detected he had a severe and complex congenital heart defect that would require surgical intervention to save his life. After arriving at LLUCH the medical team discovered Ezras anatomy was one of the most complex cases they had seen. Ezra had Pulmonary Atresia, Dextrocardia, Heterotaxy Syndrome, Asplenia, Stage 4 Hydronephrosis, and would require multiple operations and medications throughout his life to stay alive. We were told by the medical team and many other patients parents at LLUCH that we were at one of the best facilities in the US to help Ezra, so as young, unaware parents we believed them. They performed Ezras first open heart surgery when he was just two weeks, to our knowledge it was successful, it would keep the blood circulating through his heart and keep him alive for a short period of time. Due to Ezras Asplenia his immune system was almost absent, he would spend many months of his first year of life in and out of the ICU due to being sick and dehydrated. One month after Ezra's second birthday he would undergo his second open heart surgery, with a lot of risks and uncertainty we waited for the 8 hour procedure to be done hoping for the best outcome, unfortunately this was not the case. After the surgery was complete, the surgeon bluntly stated Ezra had a complex condition and nobody could do anything to help him anymore, and walked out. Scared and hurt we sat in the room waiting to see Ezra. After his surgery Ezra experienced a lot of complications and required a lot of medicine to restart his heart due to arrhythmia. We felt hopeless for weeks to come, but we couldn't give up, Ezra was our everything and we would do whatever it took to find someone who could help him. We searched and searched everywhere, after some time found Dr. Hanley at Lucile Packard Children's Hospital in Stanford, we reached out to the heart center at LPCH and after patiently waiting for months they contacted us and requested we get Ezra's medical records from LLUCH, this wasn't as easy as expected. It took a lot of fighting and time to get his records from LLUCH. During this time Ezra had to go through two separate kidney surgeries in two months at Loma Linda, both successfully thanks to his amazing nephrologist. After months of collecting Ezra's medical records, putting him through tests, imaging, and caths, we finally received amazing news, Dr. Hanley reviewed all Ezra's medical records and believed there was a surgery that he can do that would be a full repair of Ezra's heart, we felt so much relief and hope. Ezra's appointments at Loma Linda were always hard at this time, we watched doctors laugh about it saying it's impossible to help Ezra, or cold remarks such as "Good luck, I'd like to see someone actually try and fix that". It was heart breaking, not only to watch your child's health decline but watch the people around him who are supposed to do whatever it takes to help him joke about his life. We kept our faith in Dr. Hanley, knowing that he was a better surgeon in a much better facility, and followed through with Ezra's third open heart surgery 10/28/2016. It was a complicated 10 hour surgery that would repair Ezra's heart and redirect his blood flow so as to flow as a normal heart should. Dr. Hanley came to us immediately after the surgery, and gave us the best news we had ever heard, Ezra's heart was repaired and his oxygen level was now 100%, we all cried in happiness, believing Ezra would now live a beautiful life free of heartache and suffering. Things quickly changed unfortunately, hours after surgery Ezra's oxygen levels began to fall, and nobody had an explanation as to why. They took him back to do a heart cath operation, but this proved unsuccessful as the reason his oxygen was low. The next month of recover would be a complicated time for Ezra, again suffering from arrhythmia and requiring extra medication and heart pacing wires to reset his heart rate. Once again we were scared, but we were assured by the medical team that although Ezra's oxygen is lower than expected he still had normal heart structure and blood flow, the surgery was a success so Ezra would be going home (12/04/2016) on a little oxygen but would hopefully be off soon and back to himself again. Ezra's physical appearance after the surgery was much improved from before, he no longer had ice cold hands and feet, he seemed to be less fussy and feeling better overall. Ezra had his cardiology check ups at Loma Linda as scheduled, echocardiograms and EKG's showed Ezra was still doing well. A few weeks later we noticed at home Ezra wasn't eating well, seemed more tired than usual, and wasn't breathing normally. We immediately took him to Loma Linda on 02/04/2017 (Close to our House, and his regular cardiologist is there), after a chest x-ray, CT Scan, and echo, his cardiologist came to us very worried letting us know Ezra may have a serious problem and he needed to be flown back to Stanford for treatment, if possible. Upon arriving at LPCH Ezra went in for another full body MRI scan, he was scheduled for a heart cath procedure but this would be delayed 6 weeks due to Ezra getting pneumonia. From what tests were done at LLUCH and LPCH the doctors concluded Ezra had a very rare and very serious disease, Pulmonary Vein Stenosis. This disease causes your pulmonary veins that release the oxygenated blood from your lungs to your heart to close, and once they close its impossible to fix. During the 6 week wait we had many meetings with doctors, many tests done for Ezra, and after a few weeks Ezras symptoms began worsening. More recent tests showed that two of the four pulmonary veins had closed completely, Ezra's right lung was now blocked, backing up with fluid, and causing him a lot of pain. The only option was to insert a chest tube and drain the fluid, after only a few days over 1500 milliliters of fluid were drained from Ezras right lung and the surrounding space. The doctors knew they needed to get Ezra to the heart cath lab as soon as possible to see if there was anything that could be done to save the other two veins, the only thing that could be done to save his life. After the cath we had to wait a week to get results from the surgical conference (a meeting between the entire medical team to review cases and possible interventions). At our meeting after the conference 03/23/2017 we received the worst news possible, there wasn't anything they could successfully so to help Ezra recover from this disease and they would be sending him home to be in the comfort of his own family and surroundings. The doctors have no exact time estimate that Ezra may have, it truly depends how fast the stenosis occurs and affects him, but they expect that due to Ezra's already complex anatomy this will be a lot harder on him and happen more rapidly than other cases they have seen. Due to the discomfort and pain they will be sending Ezra home with hospice care and morphine to ease his symptoms as much as possible, they expect that within two weeks to two months of discharge Ezra will require a lot of pain medication, which ultimately will increase to the point of putting him into a medically induced coma. Ezra will be discharged from the hospital 03/27/2017 and we will be making the 7 hour drive home so Ezra can be with his parents, little brother, grandparents, and the rest of his loving family. As a parent the situation doesn't get more complicated or painful, from now until the end we will do what it takes to make his life the best possible.