Friday, May 17, 2013

It Has Been a While


We were back in the hospital with Eliah this past weekend.  He had a super fun day on Saturday, playing on the waterslide and spending most of the day outside.  He laughed and squealed all day, despite having about 10 seizures over the course of the day.  He would seize, then come out of it smiling, and went right back to having fun.

By 5am, he was seizing over and over again, and ran a temperature of 102.4.  Because he has a port, we watch for signs of infection, like a temperature of over 102.5.  So, I kept a close watch on him as he seized on and off throughout the morning.  By noon, his temperature reached 104 on one temporal artery and 106.8 on the other.  It was time to call the doctor.

They led us to the ER, and we were welcomed with familiar faces.  Eliah was still seizing on and off, but Tylenol was helping to control the fever, as we waited for his blood count to come back.  We got word that Eliah's white blood cell count was normal, showing no infection, likely just a virus, but his inflammatory marker seemed high.

In addition, when I showed them the log I keep for seizures, they became very concerned about the number of seizures he's had in the past month or so.  Since May 1st, Eliah has had 31 seizures.  And because of that, they admitted us to the hospital to help get him under control.

By Monday morning, he was foggy from seizure medicine, but his fever was easily controlled with Tylenol.  They pushed another increase of the seizure medication that knocks him out until noon each day (Vimpat), and we are hoping that holds him off for another couple months, until we have to increase it yet again.

On the Hemophilia side of things, Eliah has been having an increase in bruising on his arms and legs.  I can't see inside, but he is likely having joint bleeds as well.  The doctor has increased his recombinant factor in the hopes to prevent more bleeding, but they also ran an inhibitor test while we were in the hospital.  Inhibitors are like an immunity to the medication he needs.  The earlier you begin treating with factor, the more likely someone is to develop these inhibitors.  We started Eliah at five months, so it's quite possible he could develop this immunity.  What happens if he does?  We don't really think about that yet.  We'll see what the test has to say when it comes back.

Despite the seizures, bruising, and fever, Eliah is one super happy kid.  He loves his buddy, Molly, who stays by his side to both love him and aggravate him. And he loves his big sister, who also loves and aggravates him.

Natalie is growing by leaps and bounds.  She is having a great summer, full of swimming, books, crafts, plays, and family.  The summer is flying by and she will be a 3rd grader in just over a month!

The time is going quickly, and our family is creating as many happy memories as we can.  We don't know what the future brings, but we are making the most of what we have now.  Thank you so much for the constant outpouring of love for Eliah and Natalie.




Nanny sang Eliah to sleep

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