TrachKids.org

TrachKid Profile

This past Labor Day (9/8/09), Raffie seemed to have a virus of
some kind.  Tuesday, Amy took him to the clinic where the doctor said he
was dehydrated and gave him two hours of IV fluids. The doctor expected
him to perk up after the IV but instead he got worse and after a few
more basic tests, the doctor decided that Raffie might have meningitis and flew him
and Amy by helicopter to St. Vincent in Green Bay so he could be
monitored and tested for meningitis. Two days after being admitted, Raffie had a seizure and stopped
breathing.  He was immediately put on a ventilator and given anti-seizure medication.  The MRI
showed that he had more swelling than in just his mengies area of the
brain (meningitis) and that it had spread
to some of the white
matter (encephalitis) and had settled in the Pons area which
controls your breathing and eating. The next few weeks were very stressful because every time that the
doctors would try to remove him from the ventilator, he would begin to
seize. Raffie was unable to move his left arm and hand and right
leg.  Since then we have found out that this paralysis was caused by his
own body’s immune system fighting off the virus. His own antibodies
stripped some of the coating from his nerves causing the signals to
dissipate rather than reach their target. Also,
he has more severe damage on his left arm and upper arm on the right
side in the horn cells which attach to the spinal column. Raffie also
was having problems keeping food down and was vomiting a lot which led
him to have a G-tube put in for feedings and eventually a G/J tube. After being on the ventilator for almost a
month, with the fear of pneumonia looming from having a tube down his
throat, the doctors recommended a tracheotomy since it was beginning to look like Raffie
was going to be on the vent for some time. At first the tracheotomy
seemed like a really scary thing to us but now it really is no big deal
and is actually a lot better because he can move around a lot more and
doesn’t have a tube down his throat so he is a lot more comfortable. As for his nerve
damage, he is gaining a lot of movement back in his leg and nerve
tests show that his nerves are recovering and he is almost certainly
going to be able to walk again but it may be some time before that
happens.  His left hand and forearm are also recovering but the nerve
test did not show much if any re-growth of nerves in his upper left arm
and this may mean that he will have some permanent loss of function
although some nearby nerves may sprout and give him some, or all,
function back eventually. His upper right arm has a similar prognosis. Luckily his right hand and forearm seem unaffected
and he has full function up to his elbow. At this point, almost 3 months later, Raffie is able to
go without ventilator support for up to 10 hours a day and is getting
stronger every day. He is learning to speak around his trach, eat, and
is cognitively 100% ok

• Gender: Male
• Demographic Region: North America
• Siblings: Two
• Medical Conditions: Encephalitis, Viral Meningitis

History

Blog

View recent blog entries

Member for

1 year 48 weeks

Location

Country

United States

State/Province

Wisconsin