So...they started a treatment plan and one part of it was putting a NG tube up his nose
and down his throat so he could get food. I had to learn to do this procedure if I wanted
to take him home....so I did. We were discharged Friday March 21st. During that
weekend he got a bit worse. He kept only a couple feedings down and was having
horrible coughing fits....Sunday night one lasted two hours. The next day 3/24 we were
admitted back to Riley North. This time they got the IV in on the first try. The goal was
to get him hydrated and keeping food down and maybe we could go home. In the
meantime they put a tube with a camera down his nose into his lungs (yes, while he was
awake) to take a sample. The results came back on Wed. 3/26 - they found another
pneumonia - pneumocystis pneumonia (PCP). This is an opportunistic virus - it attacks
you when you are down and people like you or I don't get this. This is common in people
with HIV with compromised immune systems. At this point they transferred him to Riley
downtown.
and down his throat so he could get food. I had to learn to do this procedure if I wanted
to take him home....so I did. We were discharged Friday March 21st. During that
weekend he got a bit worse. He kept only a couple feedings down and was having
horrible coughing fits....Sunday night one lasted two hours. The next day 3/24 we were
admitted back to Riley North. This time they got the IV in on the first try. The goal was
to get him hydrated and keeping food down and maybe we could go home. In the
meantime they put a tube with a camera down his nose into his lungs (yes, while he was
awake) to take a sample. The results came back on Wed. 3/26 - they found another
pneumonia - pneumocystis pneumonia (PCP). This is an opportunistic virus - it attacks
you when you are down and people like you or I don't get this. This is common in people
with HIV with compromised immune systems. At this point they transferred him to Riley
downtown.
Sebi's story
www.lovebubbleboy.com
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www.lovebubbleboy.com
Turns out he is not an "easy stick".
Just putting an IV in proved
extremely difficult as after five
hours trying to get one in (he must
have been stuck 12 times or so)
they were not successful. After
giving him a day of rest and extra
fluids the IV went in on the second
try. Having gone through this alone
was already overwhelming and we
still did not have a diagnosis.
On 3/20 they broke the
news...SCIDS. I didn't know what
that meant but was told the clock
was ticking. I looked on-line and
was devastated.
To my knowledge it doesn't run in
our families. The more I read the
more upset I got...he is one in
100000 or maybe a million. We
"won" the lottery - but not the one
you want to win. Even as I write
this I can hardly believe it. And now
life is different - in one instant it's
turned inside out, without warning,
now he has to fight for his life. So
far he has shown to be one tough
baby and still has his moments of
play.
Just putting an IV in proved
extremely difficult as after five
hours trying to get one in (he must
have been stuck 12 times or so)
they were not successful. After
giving him a day of rest and extra
fluids the IV went in on the second
try. Having gone through this alone
was already overwhelming and we
still did not have a diagnosis.
On 3/20 they broke the
news...SCIDS. I didn't know what
that meant but was told the clock
was ticking. I looked on-line and
was devastated.
To my knowledge it doesn't run in
our families. The more I read the
more upset I got...he is one in
100000 or maybe a million. We
"won" the lottery - but not the one
you want to win. Even as I write
this I can hardly believe it. And now
life is different - in one instant it's
turned inside out, without warning,
now he has to fight for his life. So
far he has shown to be one tough
baby and still has his moments of
play.
