RYAN'S
STORY
Ryan's first episode of Hemolytic Uremic Syndrome (HUS)
happened when he was 10 months old. He was diagnosed with the Typical form
of HUS caused by E.coli. He did not need any other treatment, other than strict
fluid restriction at that time. That hospital stay was a mere 7 days. The
nephrologists closely monitored him. At first he was going every couple of
months; eventually we were only going twice a year.
On
That's when we were told that Ryan has Atypical HUS. That
same day Ryan had a catheter placed for dialysis and plasmapheresis.
The protocol for a child was to do dialysis as needed and pheresis
every day for a week. That's exactly what was done. He had 5 days of dialysis
and 7 days of pheresis. He was in the ICU the entire time. After the first
couple of days my husband and I took turns staying over so one of us could
be home for our younger daughter. Things started to improve with each day
of treatment. We remained in the ICU, even after his numbers began to improve
because of his blood pressure. There were times his blood pressure was as
high as 180/120. They had to put a naso-gastric
tube in for nutrition because he refused any meds by mouth. By July 19th we
were moved onto the floor, out of the ICU. His blood pressure was still high,
but he was stable. We were discharged on July 26th. Ryan was on about 5 different
medications for his blood pressure and vomiting. We were to follow up with
the nephrologists twice a week.
Everything was going well. His
numbers remained within their limits, blood pressure was stable. His lab work
on his visit August 1st looked good. A mere 2 days later it all started again.
He began vomiting and acting lethargic again. We went to the emergency room on
August 3rd. This time they placed a permanent catheter for pheresis
and dialysis. He only needed dialysis for the first few days. He had pheresis everyday over the next several weeks. His blood
pressure was very hard to keep stable. He was on so many medications it was
hard to keep track of them all. We skipped one day of pheresis
after about 3 weeks, so he was now on a 6 times per week pheresis
schedule. Again my husband and I took turns staying overnight with him so we
had very little time together. We spent 5 weeks in the hospital this time. The
first 3 weeks were in the ICU, the following 2 weeks were on the regular floor.
I followed his numbers very closely. It seemed like they were stuck and not
getting better for the longest time. His blood pressure had been stabilized so
we finally convinced the doctor's to discharge Ryan. We went home on September
8th. We were on a strict outpatient schedule with pheresis
6 times a week. We tried to decrease frequency of treatments a couple of times
and his numbers got worse. We tried plasma infusions and his body didn't
tolerate that, his blood pressure would go extremely high with that extra
fluid. We did have a couple of hospitalizations, just a couple days here or
there for increased blood pressure or to try a new medication. Ryan also had a
G-tube put in on October 23rd. It wasn't until November that we tried skipping
treatments again.
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It is now January 2003, six months since the start of
all this. We're down to pheresis 4 days a week and
hoping to try 3 days a week pretty soon. At one point Ryan was on 14
medications, he is now on 5. Ryan has a record in the pheresis
unit at the hospital. To date he has had 127 pheresis
treatments. There were times when I thought that things were never going to
get better, but I was wrong. The hardest thing a family could ever deal with
is when the doctors don't have answers to your questions; you drive yourself
crazy with what if’s and why’s. When I am at the
end of my rope, ready to throw in the towel; I take a look at Ryan. He is the
one that is actually going through this illness, being hooked up for pheresis for 2 ½ hours 4 days a week. When I need a pick
up I just look at his adorable little face and see that he still has a smile.
He's laughing, he's playing, and he is showing the world that he is going to
beat this thing. It may take his whole lifetime before there's any better
treatment or even a cure for this illness, but Ryan is not letting it beat
him. He wakes up each day and he may only be 3 ½ years old, but he knows he's
sick, he knows he is different from other children. It doesn't stop him. It
doesn't slow him down. If this illness hasn't stopped him, I will not let it
stop me. We will beat this. |