The
adventure of Blake (Scooter) Smith.
Blake was
born July 14, 2009. Blake is such a joy. He is definitely a wonderful addition to our
little family.
When Blake was 7 months old, he had been coughing, wheezing, gagging and
now making this high pitched sound that the doctors call a
“stridor” . For the past couple of months we have struggled to find the right
nipple size for his bottles because it seems like the ones that are appropriate
for his age are drowning him and he begins to choke and cough and eventually
fall asleep. Chad lays in the chair with him on his chest to go to sleep and he
often wakes up crying or choking. We took him to the Emergency Room in Ely and
they feared that his airway was penciling off. His oxygen was low and they even
ran a heart scan on him at the time (probably because it was around and they
did not know what else to do). They chose to Life Flight him to Salt Lake City,
Utah where that evening they determined he had RSV and Metapheneuma Virus. We
got there right in the middle of RSV season and so the hospital was very busy
and shorthanded. We were sent home after a few days and told to see an ENT
doctor in 6 weeks. What a horrible six weeks that was! Blake coughed, and
choked more than ever. We would sleep with him in the chair, prop him up when
he slept and feared to lay him down. He continued to have the stridor and would
make a high pitched whistling sound when he would breathe in. At the time we
were not aware of how blessed we were that he even survived that time. But then
again, if you know Blake he is a fighter and this was just the beginning of his
fight! J
We finally had our appointment with Dr. Albert Park on April 2,
2010. We drove to Salt Lake City Utah, and met with Dr. Park at The University
of Utah Medical Center. He used a scope with the camera on the end to look down
Blake’s throat. Nothing could have prepared us for his news….. He removed the
scope and told us our beautiful little baby boy had Bilateral Vocal Cord
Paralysis and would probably need a Tracheotomy. He sent us to do a CT Scan to
rule out any type of brain malformation or tumor that could be pressing on the
muscles that would operate the vocal cords. It was determined that since there
was no injury to the cords and that the CT scan was normal that it was a rare
congenital condition. We weighed our options and determined that we would first
try a botox injection to separate the cords to avoid the trach. Chad was
prepared to go for the trach from the get go but I was in more denial and
wanted to exhaust other options first.
April 2010, we said goodby to Aleah and began our journey of many goodbyes and many many nights apart. Aleah was a brave big sister and worried about what was goin on with her brother. We had the Botox surgery. Everything seemed to go well with the surgery. We just had to wait and see if it worked.
They did a swallow test on Blake to make sure his food was making it down to his stomach. They started with a light fluid and moved up to the consistency of baby food. Blake aspirated the food. He did
not pass this test. Sad L Blake is still working really hard to breath. It looks like they will end up doing a Tracheotomy.
Blake got his Tracheotomy Tuesday April 13, 2010. He only had to stay on the ventilator a couple days. Blake had another swallow test and failed. L
Friday April 23, we were able to finally leave SLC and go
home. It took a while for the equipment
to get to Ely. But we are all set up and
ready to go home. Yeah!!
Monday April 26, Blake has both kinds of RSV. We were sent
back to SLC, UT for treatment. Blake’s
numbers are all crazy and they put him in PICU and on a ventilator again.
May 15, 2010 The Doctors told Becky they will be sending home
a ventilator for Blake to use when he sleeps.
We had some problems getting the ventilator set up in Ely. Finally Thursday
May 27, the equipment finally got to Ely and now we are headed home.
Friday June 25th Blake is back at Primary Children’s
for a check-up and swallow test. He was able to pass the first part, the yogurt
like substance, but failed the rest. This means that he will now have to have a Gastrostomy Tube, or G-Tube, surgically placed into his stomach. They will be doing the surgery on
Monday June 28, 2010. They also put in a new trach because he is starting to outgrow
the original one.
March/April 2011
We have had a pretty fair year and things have been generally
average for a child on a vent while he sleeps and with a tracheostomy tube. We
were able to get him synergist shots to try to prevent RSV this season. He gets
them every six weeks and they have been tremendous. We have gone in to the
local ER a few times with aspiration pneumonia but that was usually treated
with antibiotics and we were able to take him back home. His room is a
miniature hospital and our lives revolve around suctioning, checking oxygen,
tubes, cords, meds, syringes, saline bullets and many other pieces of medical
equipment I never thought I would use let alone speak of on a daily basis. Our
daughter was the only 3-4 year old we knew who spoke of or described a
tracheostomy. We have been doing some trials off the vent during naps and at
night which seems to being going fairly well. We went in for a sleep study and
ended up in the hospital a few days later with more aspiration pneumonia. It
was determined by the sleep study that he was hypoventilating and that there
was still a need for the vent. He also later in the month started developing
more difficulty eating and began vomiting on a daily basis and sometimes it was
blood that was coming out of his mouth. Doctors determined that he had some
issues with food motility and we were given two options. We could go with a
Nissen Fundoplication where they wrap the child’s intestines so they are unable
to reflux food or putting a g/j feed tube in and feeding him through his
intestines. The Nissen was irreversible and had some long term feeding issues
so we went with the g/j tube primarily because I was trying to tiptoe through
things and not cause too much damage. Chad on the other hand probably was on
the right track as he was very much in favor of the Nissen.
July 2011
We went in for Trach/Vent clinic and Blake was having yet
another episode of breathing issues. The pulmonologist met with us and
immediately determined that he was going to need to be admitted again. (at this
point I could not even tell you how many times we had been in the hospital)
When Blake goes in to the hospital they generally admit him through the
Pediatric Intensive Care Unit, stabilize him and either discharge him from
there or send him to a special pod of the hospital designated for trach/vent
patients. So, we wheeled the stroller up to the 2nd floor where we
were met by yet another team of amazing doctors and they cared for Blake yet
again. The extra sad part about this hospitalization was that four days after
we were hospitalized our family was supposed to leave on a vacation to southern
California to go to Disneyland, Universal Studios, Sea World and so forth for a
week. Sadly, Blake and I stayed home and Chad/Aleah went with Grandma and
Grandpa Smith. Blake returned home on the vent for 24 hours for a couple of weeks.
January 2012
SICK….SICK….SICK AGAIN! Flown to Primary Children’s Medical
Center (PCMC) with Pseudomonas and lung
collapse.
February 2012
More sickness and another trip to PCMC.
March 2012
Took a trip to Cincinnati, Ohio to see a very
progressive/cutting edge Aero digestive team. We spent the week meeting with
doctors and preforming procedures. They found a few more additional issues but
still no answers. We returned home a bit more tired (did not know that was
possible), a bit more disappointed and still without a real diagnosis to
explain what Blake has been going through.
We were home for four days when we were flown out yet again
because Blake was having more respiratory issues. It was determined that he had
H1N1 (Swine Flu) and strep in his mouth and some other things growing out from
his trach aspirate. We discovered that
he probably contracted these on the airplane to Cincinnati or possibly even in
the hospital while we were there simply because PCMC had only seen one other
documented case of it this year. We were sent home after about 6 days in the
hospital and waited for out next appointment.
April 9, 2012
Grandma and Aleah came with Blake and I on this trip to see
the pediatrician and the Neurologist. Dr Sakonju. We did a procedure called an
EMG where they hook electrodes to his hands and feet to measure the nerve and
muscle impulses. They also place needles through his skin to listen to the
impulses being sent to his nerves. We are still awaiting the final
results/report but she told me that his nerve impulses in a child his age
should measure at a 5 and Blake was getting between at 0.2 and a 0.3. Which it
does not take a doctor to figure out is SIGNIFICANTLY low. His sensory impulses
were actually fine so that means that he can feel or sense touch/pain. His
muscles were surprisingly working overtime. They should be at about a 20 and
his was reading at 50-60.
Nothing in my life or our journey could prepare me for the
looks on the faces of the medical staff in that room or words that would
transpire over the next few minutes. The doctor determined that he had all of
the signs, symptoms of a child with SMARD (Spinal Muscular Atrophy Respiratory
Distress). They told us it was very rare and many children never walk or do
many of the things that Blake had learned to do. This probably accounts for why
his muscle readings were so high during the EMG test.
They are now testing Blakes blood to confirm the Diagnosis of SMARD. Even though we are waiting at this time we have started the Journey to understand what Blake is going through.
