Profiling SMARD: Hunter’s Story

Hunter’s story

I had a great pregnancy, delivered full term. Hunter was a healthy
baby 7lbs 14oz, 19in long. Everything was going great. He slept and
ate all the time. Well all of a sudden he develops a squeak when he
would breathe. The doctors weren’t worried. Then he starts having a
problem eating, he just didn’t want to eat. He had weekly weight
checks and he kept losing weight. We went in to his doctor one day and
hunter was looking really pale. His Dr told us to take him to the
Children’s Hospital ER and that was the beginning of Hunter’s journey.
June 10, 2009 I will always remember that day. Hunter was 2 ½ months
old. He was admitted to Seattle Children’s Hospital with respiratory
distress. Everyday seemed to get worse. He was put on oxygen. Then he
refused to eat, so they put a feeding tube down his nose to his tummy(
a NG tube). He was really uncomfortable and cranky. The night of June
15th Hunter crashed and was moved to the PICU ( pediatric intensive
care unit). There he was put on CPAP (a high flow of oxygen through
the nose) for maybe a day. Then they intubated him for a procedure and
decided to keep him intubated, because he was comfortable. He stayed
sedated for a long time, otherwise he would try to pull the tube out
of his throat. They tried to extubate him a few times and he always
failed. They decided to give Hunter a tracheotomy in August of 2009.
Hunter was their little mystery, they ran every test they could think
of and everything came back fine. One day a
Neurologist comes in and he says that Hunter has the symptoms of
SMARD. I thought no way, my baby will be fine and he will just grow
out of this. He did the test and we went about our business learning
everything about how to care for Hunter. Before we are about to take
Hunter home I ask someone if the results are in and they said he was
negative, I was so happy. We took Hunter home and everything was
great. We went back for a check up and the Dr told me that Hunter did
have SMARD, the person who told me read the results of the SMA test.
Well I just lost it right there, I just couldn’t believe it, I thought
my little man was going to be just fine.
Well we went home and adjusted to life with Hunter. We were only home
for 2 months when Hunter almost died. I had a nurse who I trusted to
care for him while I slept. One night this nurse was negligent with
Hunter’s care and almost killed him. To sum it up She messed up his
tubing, so he wasn’t breathing and she didn’t do anything about it.
She waited to wake me up and I went in his room and he was lifeless
and I saved him and brought him back to life. He then had a seizure
and was taken to the hospital. He was unresponsive and had seizures on
and off for a few hours. Then he finally came through and was his
happy little self again.
We went a whole year without Hunter having to go to the hospital. Then
flu season came around and he has been in and out since then. Recently
we found out that hunter has a little amount of brain damage and
seizures all from when that nurse almost killed him.
So that is Hunter’s story. I have been putting off from writing it. It
is always emotional thinking back. I always thought when I would have
a baby I would be married and my baby would be healthy, would be able
to walk and say I love you mommy! No matter what though I know my baby
loves me, I know he will walk one day, and he will be healthy one day.
That is what keeps me going strong knowing that my baby is going to be
ok.

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2 Comments

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2 responses to “Profiling SMARD: Hunter’s Story

  1. peggy thomas

    This story is almost the same as our Logan who is 6 months and still in the Oakland Children’s Hospital . We are most afraid of something like that happening when we get home. With all my daughter and I HAVE GONE THREW WE STILL CHARISH EVERY MINUTE WE HAVE WITH HIM .SHE IS WITH HIM EVERYDAY AND AFTER i PUT MY 7 KIDS TO BED i GO EVERY NIGHT TO BE WITH HIM UNTIL AROUND 1:00A.M.This is something none of us would have chosen.But Know that your in every heart and prayers of the other mothers who are on this journey also.On my way to the Hospital now. Peggy

  2. D Bonnicksen

    Thanks for writing about Hunter, You are the best Mom I know and Hunter loves you fully.
    love and kisses Grampy

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