Dominic's continuous care

After pushing for an hour and a half Dominic Rivera was born by cesarean on June 23, 2014.
He was 8 pounds 9 ounces and 21 inches long. Mom and Dad (Robyn Duray and Xavier Rivera) were so excited to finely have their baby boy here. That excitement quickly turned to heart ache and worry 24 hours later when they noticed something was wrong with their precious little boy.
      It was determined that he had a bleed between his scalp and skull and was rushed to St. Paul Children's Hospital for a blood transfusion. Dominic spent 10 days in the NICU at Children's and then was released to go home. 
      Dominic was growing and thriving like all normal babies and even was very advanced in some developmental areas.
(This is the time that the specialist called the honeymoon phase when babies are handled very gently and there are no symptoms of anything being wrong. )
   His mom and dad were amazed at his strength and abilities, he would roll across the room, sit well while playing with toys at 4 months always having a smile on his face for all who saw him.

   That all change on Thursday, November 20th when Grandma Karen noticed he wasn't himself. Dominic just laid there looking at her and not his smiley normal self. Robyn took him into the ER the doctors in the ER did tests and sent her home thinking it was just a virus. 

   Still running a fever he got sicker later that night. Saturday he was still running a fever and started throwing up, so another trip to the ER. They took blood, urine and check him out for everything. The blood showed that his hemoglobin was low at 7.5. When asked why it was low they were told that he was either bleeding somewhere or an infection was eating up his blood cells. Dominic was given a broad spectrum antibiotic, anti-nausea medicine and fluids. They said he needed a blood transfusion right away and ambulances Dominic to St. Paul Children's Hospital.

Robyn road with him in the ambulance and Xavier followed close behind in their car. Once there they retested his blood and told them that he had low iron with flu like symptoms. 
    Monday morning knowing something was still wrong to the clinic. Once again they were going to send them home but Robyn and Xavier insisted that they needed to find out what was wrong.
When coming back from having an abdominal x-ray.
    Dominic started having a seizure. The doctor sent Dominic to the ER ASAP where Robyn and Xavier demanded answers!!!!
The hospital quickly did a CT scan of his brain and tried to put in an IV in the only place they could find in his scalp to get him some fluids. Robyn and Xavier's hearts were crushed when they were told that the CT scan showed bleeding and a mass in his brain that could be a tumor.

    Dominic was transferred immediately to Children's Emergency room. Once there the neurologist looked at the CT scan and said there was a definite bleed on his brain and had to do labs and have an MRI stat. The hematologist told them that they were checking to see if he had hemophilia a rare blood disorder. They were only able to get enough blood for one test the factor 8 test which came back negative. Dominic was in need of a blood transfusion and fast they needed to know if hemophiliac before they could put in a central line to do the transfusion. They took Dominic for his MRI where he was put under, intubated and they were able to draw enough blood to do the factor 9 test.
     The MRI showed that the mass was a sever bleed on the right side of his brain and a small bleed on the left side. The hematologist informed Robyn and Xavier that Dominic has a rare form of hemophilia. He had hemophilia type B and he was missing factor 9 in his body. His condition is rated either mild, moderate or severe and Dominic's is severe meaning his body produces less than one percent. This also means that Dominic could just spontaneously bleed.

He was admitted to the PICU and was put on a regiment of drugs that his body needs to regulate the factor 9 needed in his blood. After having 2 more seizures and a continous IV drip. With large doses of the factor to help stop the brain bleed.  

    This whole roller coaster ride has been extremely hard on Xavier and Robyn but at least they finally had answers to why their little boy was so sick.

This condition will be with Dominic for the rest of his life.

He will now need to be given factor 9 that his body doesn't produce for the rest of his life.
He also has many other needs that come with this condition.The medication for his rare blood condition needs to be taken EVERYDAY  a week for two years plus weekly labs have to be done.  
During the next two years Dominic will be in and out of the hospital  treating his condition .  He now has an inhibitor to this drug which causes his body to fight off the drug that he has been given  to Stop bleeds.This drug will cost thousands a day to give him and he will be monitored closely by hematologists from the Children's Specialty Center out of Children's Hospital in Minneapolis (they specialize in blood only).

Robyn and Xavier are also being educated in his disorder, it will be up to them to eventually mix and give Dominic the drug he needs through a central line in his chest called a Hickman (when he gets older they will be able to put in a permanent port in his chest). Susan L. Kearney MD who is a hematologist specialist told Robyn and Xavier that they (mom and dad) will be Dominic's advocate and also educate his regular doctors on this rare blood condition.

At this time it is not known when Dominic will be released from Children's Hospital.

Please donate and help Dominic get the medical treatment he'll need.  This will be ongoing throughout the rest of his life.  Please share his story. 

Thank you, 

Xavier and Robyn


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Robyn Duray 
Roberts, WI
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