Jaycob’s Journey

Jaycob’s journey began April 24th, 2016.

Jaycob was born 5 weeks early and spent 5 days in the NICU.  Once born he had to have some oxygen due to trouble breathing and he had low blood sugar. He then was put on machines and had a g tube placed as he couldn’t eat and breathe at the same time.

Jaycob while in the NICU, kept getting petechiae rashes but they said this was normal for a premature baby due to the skin layers being 3 rather 7. So once discharged we were cautious, but even with changing his diaper he continued to get the rashes and odd marks, and was not holding down breast milk or dairy and so doctors began running every test imaginable. And that’s when it was discovered that he had a femoral corner fracture and they said it was so small no additional care or monitoring was needed. However, due to him being so young and having a fracture they had to hotline per hospital policy. The doctor talked with the Department of Children and Families Services (DYFS) and the police, and showed them the medical tests. Everything was abnormal and they were working this as a medical condition rather abuse.  However, the doctor told me this is where it can take months before finding answers and at that point I went and pushed for a second opinion and we switched hospitals.

This hospital believes it’s abuse until otherwise known. However I had no idea of this, during a work-up the new pediatrician accused us of shaken baby syndrome (SBS) when we told him our story and were upfront with him and we wanted answers for what’s wrong. He still couldn’t gain weight he was marked failure to thrive; he was easily marking and getting petechiae rashes and projectile vomiting.

We took him to the hospital for additional testing we had nothing to hide we wanted answers. We never hurt our son. And the hospital took x-rays however we later learned they mistook them and read the badly taken x-rays. They said my son had fractures in every extremity when he did not. DYFS removed Jaycob from our care and the hospital said it’s abuse until otherwise known and it will be about 6 weeks for genetic testing.  This was June 21st, 2016. On July 13th, we received results back stating Jaycob had a mutation for HPP and they wanted to retest and test myself and my husband.  We learned my, husband has HPP and he is now being followed by Dr. Dahir.   We are still fighting for our son back into our care and not in State’s custody and we are fighting to get him to Dr Whyte or Dr Simmons.  But are running into hurdles.  Soft Bones has helped me fight and keep me strong and when I feel like giving up they remind me to push harder and I’m not going to be alone…

Jaycob has had so many obstacles and he still smiles and laughs. He pushes me forward to learn more. To never judge and to live each moment as it’s last. Never to give up fighting no matter how hard the fight is. Jaycob is only 11 months old and he has well over 4 thousand pages in his hospital records.

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