Help us bring Jayden Home. #weareJaydensvoice

52330518_1604460300179326_r.jpeg52330518_1604460353466779_r.jpeg52330518_1604460390867502_r.jpeg52330518_1604460434195372_r.jpeg52330518_160446046545665_r.jpeg52330518_160446051381799_r.jpeg52330518_1604460539386499_r.jpeg52330518_1604460564980415_r.jpeg52330518_1604460597383827_r.jpeg52330518_1604460714850097_r.jpeg52330518_1604460735994655_r.jpeg52330518_1604460763768836_r.jpegJayden was born with multiple underlying health conditions as a surviving 25 week twin. Jayden suffered from an IVH (intraventricular brain hemorrhage ) while still in my belly. Which was the cause for his cerebral brain injury and many complications with his growth.  Jayden spent 8 months in the NICU and underwent 7 operations in those 8 months. Due to Jaydens severe prematurity he was discharged from the NICU with many medical equipments, care plans, emergency and preventative care instructions and records. By the end of 2016 Jayden was off of oxygen support and no longer had his gastronomy tube in place. We were making all foods pureed or baby foods and cereals and pediasure shakes. Jayden seemed to be doing great. We had a suspicion of medical neglect in 2018, but the case opened up by The Florida Department of Children and Families was closed and I was not granted my legal rights of receiving a copy of their investigation findings, nor was I given any of the information for the resources I REQUESTED, the resources only they have access to. So after many years of searching and not finding a Pediatrician that was knowledgeable of Jaydens conditions and the needs his illnesses would require, including but no limited to. Basic in home nurse care, wheelchair, trunk support,  foot and hand braces, therapies, special needs diet plan with an incremental weight gain diet plan.  In December 2019 we fell on hard times and my kids grandmother offered for us to stay with her. After getting the kids situated with school and attempting to get certified as a home health aide to provide care for my son and to be able to financially care for my family while doing so.  The next step was establishing Jaydens care with a group of KNOWLEDGEABLE primary care and specialists all within the same network to make record keeping easier and the convenience of having doctors within the same city due to frequent appointments. On March 30th,2020 Jayden woke up and was just uncomfortable. The 2 days prior we noted that Jaydens appetite was less than normal and he was constipated. Constipation was something we faced often with Jayden due to his high calcium intake from the pediasure shakes. So we attempted over the counter laxatives and belly massages, hot baths, and some leg stretches. When we noted his discomfort on the morning of March 30th, my fiance and I informed his mother as well as my kids grandmother of Jaydens condition, we all agreed we needed to seek emergency medical care. Jayden was very lethargic, responsive but not reactive, scratching at his shoulders and just moving around in discomfort. When his grandmother, who is a CNA showed up to the home, she stayed with my children and my fiance and I left with Jayden for the emergency room. The closest children's hospital to my home was Nemours Children's Hospital in Orlando, where I had once went with my daughter for a procedure right after their opening, so I was looking forward to attempting to establish Jaydens care within the hospital. As we pulled up to the hospital in the middle of this COVID-19 pandemic, they greeted us mid parking lot and asked us the basic questions about symptoms, we explained our reason for bringing Jayden in. They instructed me to park,  then informed me my fiance would not be able to enter the emergency room. They stated if Jayden is admitted then yes, but while in E.R, Michael was unable to enter the hospital. So my fiance waited in the car but remained on video chat with me for the almost 8 hour emergency room nightmare. They registered Jayden and immediately walked us into the back, once the nurse brought us behind the first door she stated that "Jayden did not exhibit the symptoms of covid, so they were placing him on this side away from the dirty ones." My stomach instantly turned in knots and I bit the tip of my tongue almost clean off. How could a nurse that takes an oath to save lives could say something so disturbing in the middle of a pandemic with sick children as if they chose to be sick. We were admitted at 8:11 pm into the emergency room, almost instantaneously they brought Jayden to the x-ray room, and did an xray on his stomach checking for any blockages, once back in the room Jayden was placed on a pulse oximeter monitor to monitor his heart rate, respiratory rate and oxygen. For almost 2 hours we waited for the x ray results. After receiving the x ray results the nurse and doctor in charge of Jaydens care stated his results were not normal but they were unsure what Jaydens normal was, so they had to wait for an email from the children's hospital that had seen Jayden before. Around midnight I was inquiring as to whether they had received the email of the records yet, I was informed that they were unsure how to help Jayden at that time and said they still had not received the email. I waited  a little while longer discussing with my fiance on the phone outside that I was going to request a discharge and ask to exercise my  LEGAL right as a mother to seek a second opinion with the hospital that had his records that was only 15 minutes away, since after hours of noting my sons discomfort and his monitors going off and no nurse even checking on him , and they still did not know how to help him. The hospital staff informed me if I was to leave with my son they had to contact The Department of Children and Families and notify them I was leaving against medical advice, I told them if that is what you have to do,then by all means do your job, But please can I have our discharge papers?  which I was told I would get. After an hour of waiting on his discharge papers, I stepped out of the door to our room, and there were 2 Orlando Police Officers waiting outside my door, I asked the officer if they were here for me, they stated they had received a call for hostility. I explained to the officers what was going on, informed them there were no threats made, he informed me that if I left this hospital with my son they were arresting me for Endangerment of a Childs Welfare? I pleaded that they had no critical diagnosis on my son and I was no longer consenting to treatment. I cried to them that they are holding me against my will (entrapment) and kidnapping my child. The nurse then came in and stated they were willing to care for Jayden and asked if I was admitting him. I felt like I had no choice, for the first time as Jayden's mother I had no say. Jayden was admitted due to a large pseudocyst that caused soooo many complications. All night they were assessing Jayden.  On March 31st, they drained the pseudocyst and right after the procedure, I ran to get food for the hospital stay, Michael stayed with Jayden. As I pulled up to the parking garage Michael contacted me to let me know there was a Child Protective Investigator there that needed to ask questions. I walked into the room and answered all the questions I could, with many dates and times of past procedures, appointments, doctor visits, I was very overwhelmed. Sandra stated she was from  Orange County and they would be transferring my case to the county which I live in. That night the doctors informed me Jayden needed to have a procedure done to externalize his VP shunt so that we did not risk any infection. Jaydens bloodwork was coming back normal so we were in the clear with normal metabolic ranges and no traces of infection. On April 1st,2020 Jayden had his second procedure to externalize his shunt. I went home to get clothes for Michael and I and a few of Jaydens belongings as I knew it would be at least a week, Michael again stayed bedside with Jayden. As I arrived to my home, CPI Stephanie from Osceola County was in the home. She asked me the same questions I was asked before. Stephanie threw many accusations and threats towards me, including that my negligence was the cause of this, with no medical notes to prove this theory. She insisted that my case should have never been closed in 2018, I explained the resources I had requested, admitted my shortcomings and struggles and told her they failed me and my child last time. She stated because of the faults in my previous workers case that they would come at me 10 times harder. She already had a safety care plan written up, with supervision provided by the 4 other adults residing in the home, she informed me Jayden was not able to come home until I agreed to it. So I as well as 2 other adults in the home consented and signed, agreeing to the terms of supervision. I went back to the hospital, and every day was the largest test to my character. It was the most degrading experience as a mother. With the involvement with DCF everyone passed so much judgement and criticism with the exception of 3 nurses and 1 doctor in the entire hospital. We provided all of Jayden's care, his bathing, his repositioning, his feeds, his wound cleanings and dressings. We had numerous compliments for our attentive care and knowledge of my sons conditions.  While admitted they started Jayden on depakote for seizures, which was working wonderfully and even helped with his appetite. They had a recommended diet from the hospital dietician which included me charting his feeds, and all of the nutritional intake information. We were exceeding those dietary recommendations. On April 7th,2020 Jayden had to have his VP shunt converted to a VA shunt going through the heart instead of the abdomen, and replacing the pump. Jaydens recovery was great, immediately getting extubated, and back to normal feeds, no oxygen needed. Jayden was medically cleared to be discharged by the hospital to my care. All day the were procrastinating on giving us discharge papers and then informed me that they would be moving Jayden out of Pediatric Intensive Care to a regular room for 24 hour monitoring. On April 9th,2020 we woke up ready to discharge, called and made all the arrangements with CPI, spoke with doctors and scheduled all follow up appointments through the same network through the hospital, and even spoke with a lawyer to have her overview my case and their accusations and to represent me and Jayden. As we were waiting around noon Jaydens grandmother to my surprise arrived at the hospital. She stated they told her to be there due to the safety plan. As I was sitting on the couch in the room anxiously waiting looking out the window I saw 3 police officers pulling into the hospital. My mother intuition knew something was wrong, my stomach turned my heart sank, I even told Michael I had a funny feeling. About 20 minutes later, the Orange County Investigator, that originally showed up walked through the door. She asked if I knew why she was here, I explained all Jaydens follow ups and safety plans. As I looked towards the door I noticed a police officer and security guard from the hospital standing there, with their hands on their weapons. Sandra informed me she was there for the removal of Jayden, that she did not believe it was correct to do the other county's dirty work, nor did she even agree with the removal. I spoke with my lawyer who told me NOT to leave, we told her we had to or they were arresting us.2 doctors from the hospital advised against Jaydens removal especially in the middle of a pandemic.  We left and called in for court on Saturday April,10th. The judge transferred the case to the county we live in the on Monday April 12th,2020 . The judge on Monday approved the emergency removal. After many hearings they denied his grandmother as placement and placed Jayden into a medical foster home, against doctors pleas not to. Over these past few months, since the removal, Jaydens health has declined.  I have voiced my concerns for the rapid weight gain, the unnecessary procedures, they have approved and are still imposing even after being denied by a judge, and the 13 new medications they have him on. They have sent medical reports that support my claims and concerns that have now caused the rapid decline in Jaydens health.  The doctors keep stating Jayden has no quality of life now, and that he requires a ventilator, the report has stated he cannot breathe without it. I begged for more time with him, to motivate him, comfort him, and to be his voice, to offer him the love he needs to keep fighting. I have been fighting for months to be heard, to be Jayden's voice. Recently there have been many admissions made in front of my case managers, lawyers and judge that supports in NO WAY has this removal BENEFICIAL for Jaydens health. So now as doctors and the state try to kill my son, and try to force end of life decisions on a baby who still smiles and laughs, who still has a heartbeat. He still has so much life to live, and we still have so much love to give. I am willing to do anything and prepare myself for any needs my son may require. Currently due to the court case, we had to move out of the grandmothers home, so I am now homeless in a hotel with my 3 kids that we still have. We have an opportunity to move to Texas with some of my family to help establish us and offer a better life for our children, but we cannot leave this state without Jayden. We are trying to hire a lawyer for civils suits since The Department in Florida cannot be sued as a whole, a malpractice suit with the hospital who is just NOW adhering to my concerns as Jayden's mother and we pray everyday it's not too late, Every minute that passes is another minute we will never get back. Jaydens life is not expected to be long, and there is so much uncertainty about how long that just might be. We are doing this fundraiser for many reasons, our goals we need to accomplish are:
-We need a home for Jayden, we will be able to maintain all bills but with us being in the hotel right now and paying weekly rent, we have no room to save for first and security. And us having a home is the first stipulation for court. Which we have the opportunity to move with family in Texas and already have jobs lined up, but the cost of moving is something that would have to be considered as well.
-We need to hire a civil rights attorney and a malpractice attorney, both average
retainer fees are $2000.00 and that's just the retainer fee to start.
-We also need to try and seek a second opinion from another medical professional, and we do not know if his insurance will cover it.
-I would really like to get certified for home health aide or CNA, so I have a medical background for my son ( my dream is becoming a pediatrician)
- I want to change the world and make law in Jayden's name. If I was not an attentive,loving and strong mother I wouldn't know to fight. And my heart hurts knowing how many families they could've done this to already and how many more they can.
- I want to become an advocate for Special Needs Children and I want to speak and spread knowledge on the flaws in our judicial system that do not protect us mothers or our children, I want to be able to support mothers and inform them of the constitutional rights that are supposed to protect us from these very situations. 


Jayden still has so much life in him, but when left alone, immobile,sedated,in a hospital bed away from the only people he has ever known, he will never live! He needs us. They went before a judge to ask for an unnecessary procedure that in all actuality shows no guaranteed beneficial outcomes or any differences then the current therapies (bi- pap) being used. The doctor stated it was uncomfortable unmanageable and that we should consider end of life decisions. I have continously questioned his rapid weight gain, excessive medications and unassisted bedwritten in a hospital having a huge role and have continued to be disregarded. Since then I had 2 supervised visits with Jayden bedside at hospital, where 2 doctors still tried coherese me to consent to the same surgery denied in front of the judge. Remind you the doctor stated JAYDEN CANNOT BREATHE WITHOUT THE BI-PAP machine, both days I went to the hospital I spoke with Jayden, cleaned him up got him up, we got him on oxygen at 4 liters for 6 hours, as soon as I left they placed him back on the machine. The following day at the visit we had him on 2 liters of oxygen for 4 hours and then to no surprise, THEY PLACED HIM BACK ON THE BI-PAP WHEN I LEFT. He is 100% dependent on me for his care, I am his voice, his backbone, his strength. He is my heartbeat. We want to go live life, make memories and just be able to have our family. Jayden's life expectancy has always been unknown, his milestones are unknown. But his life will not be anymore. He will be known! We will be heard! Please help us bring Jayden home before God calls him home! We are extremely blessed to have made it this far, let's take it home! We appreciate any and all help and prayers. So much love from our family to yours! Help us be Jayden's voice
#weareJaydensvoice 
Jayden, Mommy loves you and I will not rest until you are home! We will get answers as to his responsible for this! I will scream from the mountaintops, and I will walk through the fire! I will not rest! I cannot live without my heartbeat anymore! Mommy's coming peanut!

Donations

  • Kimberly Clairday 
    • $40 
    • 23 d

Organizer

Candyce Connors 
Organizer
Kissimmee, FL
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