Summer Fun

Picking up where the last post left off- Owen's ileus has resolved and he is doing well.  We are still working out his feeding schedule through the g-tube and have hit a few hiccups (well, projectile vomiting actually...), but it is working great for medication.  Owen was at the hospital yesterday for his follow-up after surgery and had some stitches removed.  After two stinky weeks, my guy finally got a bath last night.  He looked so great sitting in his tub chair and smelled delicious afterward.  Those bath wipes you use post-surgery leave something to be desired...

Here are some pictures of what Owen has been up to the past few weeks.

Daddy and me at a birthday party

Hanging in the cottage at York Beach, ME

Snuggling with cousin Connor at the cottage

A morning snooze amid toys

The bead toy on my left is my FAVORITE toy- and has been for over a year.  Also, I am now wearing t-shirts as opposed to onesies- my mom had lots of fun shopping for me post g-tube surgery

At the neighbor's house- was planning on a swim in their pool, but was so comfy on the pool float that I never even dipped a toe in the water!

Grilling on the deck with Dad

A snooze with Ellie's favorite mouse- she gave it to me to snuggle 

Fun at the park- my first time on the merry-go-round and I LOVE it!

Mommy and me at a birthday party

My first chance joining in the annual kids photo- Mommy was a bit nervous leaving me in Ellie's arms, but she and I did just fine!

Ellie demonstrating just how yummy beach ice cream really tastes!

Long Sands at York Beach, ME

Trying out the slide 

Results of Owen's Surgery*

*I am starting this post with an asterisk because I am sure some of my medical information will not be 100% accurate.  I will do my best to share what Owen's doctors told us last Thursday, but on a day that was very stressful...some of it might have become a bit muddled.

The good news is...Owen is home.  We came home on Sunday afternoon and were very happy to be out of the hospital.  The doctors, nurses, and staff at Children's Floating Hospital are amazing and accommodating, but I still hate being at the hospital.  Unfortunately, Owen has not been fairing well over the past few days.  Last night I brought him to our pediatrician with a very distended belly.  He has been miserable since Monday - belly bloat, arching, opening up his stitches, the whole shebang.  (of course- my guy was a cool cat on Sunday in the hospital and then Monday was screaming for the whole day.  Nice Owen.) The consensus last night between our pediatrician and Karen was Owen's bowels never restarted- Ileus.  We have reduced a medication in hopes to get things moving.  It is possible he will end up back in the hospital, but as of 10:30 this morning, the belly looks much better...although he still hasn't stooled. Poor guy!!

Here are the procedure reports from head to toe (actually thigh):

MRI:  Owen's brain MRI was read and compared to his last MRI which was in May 2012.  In a year, the white matter of Owen's brain has significantly thinned.  The brain stem appears to be functioning normally.  Owen's neurologist has been slowly steering us away from the category of Leukodystrophy for a few months now and this MRI further supports his theory.  Owen will always fit into the definition of Leukodystrophy because the white matter of his brain is abnormal.  He does not fit into the disease categories of Leukodystrophy because his disease is not progressing in the same manner.  A few examples are that his seizure disorder is much more significant than most Leukodystrophies and the progressive thinning of the white matter is much more rapid compared to most Leukodystrophies.  Owen's two brain MRI's -a year apart- show progression typical in an eight year time span of other Leukodystrophies.  The findings are significant and confirm that Owen's brain disease is progressive.  The only positive to take from this news is it helps Pete and I feel confident in our decisions to provide love and comfort to Owen for as long as he chooses to be with us, but we will be very cautious with medical interventions beyond comfort care.

Bronchoscopy: Owen has Laryngomalacia.  His vocal cords are collapsing which is the cause of his noisy, struggled breathing.  In most cases, this is something that can be fixed with a surgical procedure. Owen's ENT spoke with us about how this procedure will not work for Owen because the cause of his collapse is neurological and based on low muscle tone.  His recommendation is we put in a tracheotomy.  At this point, a tracheotomy is not in the care plan for Owen.  We will continue to treat his large adenoids with Flonase to help create breathing room.  His oxygen saturations fluctuate from 100% down to the low 90s depending on how hard he is working through out his day.  Our goals will be focused on keeping Owen calm and comfortable.  In the future, we are willing to provide supportive oxygen if needed, but we will not surgically intervene to open up his airway.

G-tube: Owen had a Mic-Key gastronomy tube placed.  So far it is working well for Owen.  We are now able to provide him with his medications via the tube rather than by mouth.  We will continue to bottle feed Owen during the day and then he will be on a 10-hour drip feed overnight for additional nourishment.  We are slowly working up to our goal feeding schedule - and Owen's belly bloat issues are making this difficult.  In the grand picture- this tube will be amazing.  Owen often sleeps for many hours and will miss scheduled medications and food.  If he is sick his sleep pattern extends significantly and proper hydration is always a concern.  These problems are now solved.  If Owen has an airway emergency in the future, we now have another way to provide him with supportive medication quickly. For all of these reasons, we are glad Owen was able to have the tube placed.

Muscle Biopsy: A biopsy of Owen's thigh muscle was taken for testing of mitochondrial diseases.  This is the only definitive way to test for this type of disease.  We would love to hear results of a diagnosis for Owen, but we are more likely to finally rule out mitochondrial diseases.  It will take about three weeks for the results.

Thank you for all of the support and prayers for Owen and our family.  We really feel blessed to have so many people cheering for the cutest red-head I know.

Playing with shaving cream the day before surgery

In his surgical garb before surgery

A very early morning waiting for anesthesia

Resting after surgery

Ellie and Mommy visiting the bear outside the hospital

Ellie playing in the amazing playroom at the hospital 

For those who are interested in why Owen's hospital is called the 'floating' hospital, I borrowed this from the hospital's website:  Floating Hospital’s history as a pioneer in pediatric care began with the Reverend Rufus B. Tobey, a kind-hearted Congregational minister who was struck by the sight of indigent women and their sick children enjoying cool ocean breezes on Boston's waterfront on sweltering summer evenings. Health care at the time had few means of therapy and fewer cures, but many believed in the cleansing and therapeutic qualities of sea air to ward off poor health and specific diseases. To help families, Tobey proposed taking sick babies and their mothers for a day's outing on Boston harbor. The Boston Herald reported Tobey's suggestion and the story brought in a flood of donations to help make it a reality. On July 25th, 1894, the Boston Floating Hospital was born on a rented boat named the "Clifford." Each day, babies received needed therapy, mothers learned how to care for and feed their children safely, and patients, parents, doctors, nurses, volunteers and crew enjoyed the "beneficial harbor breezes." For 33 years the hospital offered medical care for sick children while cruising Boston harbor. The Floating Hospital ship was destroyed by fire in the spring of 1927; fortunately, no patients were aboard.  Rather than rebuild the ship, the trustees decided to expand the on-shore program.  in 1931, the Jackson Memorial Building opened at the hospital's current site.  .

For those who are interested in why Owen's hospital is called the 'floating' hospital, I borrowed this from the hospital's website: 

Floating Hospital’s history as a pioneer in pediatric care began with the Reverend Rufus B. Tobey, a kind-hearted Congregational minister who was struck by the sight of indigent women and their sick children enjoying cool ocean breezes on Boston's waterfront on sweltering summer evenings. Health care at the time had few means of therapy and fewer cures, but many believed in the cleansing and therapeutic qualities of sea air to ward off poor health and specific diseases.
To help families, Tobey proposed taking sick babies and their mothers for a day's outing on Boston harbor. The Boston Herald reported Tobey's suggestion and the story brought in a flood of donations to help make it a reality. On July 25th, 1894, the Boston Floating Hospital was born on a rented boat named the "Clifford." Each day, babies received needed therapy, mothers learned how to care for and feed their children safely, and patients, parents, doctors, nurses, volunteers and crew enjoyed the "beneficial harbor breezes." For 33 years the hospital offered medical care for sick children while cruising Boston harbor. The Floating Hospital ship was destroyed by fire in the spring of 1927; fortunately, no patients were aboard.  Rather than rebuild the ship, the trustees decided to expand the on-shore program.  in 1931, the Jackson Memorial Building opened at the hospital's current site. 
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