Oliver Kezar

Oliver’s story written by his mom Beth.

Oliver is 8-years-old and was born with Trisomy 21, more commonly known as Down Syndrome.  Oliver was born in severe respiratory failure, along with CHD.  We knew before Oliver was born that he had CHD and would need heart surgery.  Oliver was born premature and required NICU care for a little over two weeks.  He was so tough, with so much stacked up against him.  The doctors wanted him to be 10 lbs before he had his heart surgery if possible.  Oliver was 6 months old before he finally hit 10 lbs. and could be scheduled for surgery.   Surgery went as well as to be expected.  He spent two weeks in the hospital.  We had him home for two weeks and Oliver became sick with a cough.  This was the start of Oliver’s respiratory complications that still hospitalize him frequently to this day.  Oliver has since had a second heart surgery, and countless weeks in the hospital due to chronic respiratory and asthma issues.  A simple cold for most people, can be a life-threatening issue for Oliver.

Oliver’s longest hospital stay of his short life all started due to the common cold.  He started with a cough that just wouldn’t get better.  His oxygen levels wouldn’t go above 90 so on April 1st we took him to the ER.  He was put on oxygen and April 2nd we were transferred to Sanford Children’s Hospital in Fargo.  This was a very familiar place for him.  We knew and loved the staff there.  Because of CMN, they have the amazing child life staff.  The staff knows Oliver so well and brings him an IPAD purchased because of donations made to CMN.  Hospitals stays are very long, they are also very scary for a child. Nobody likes to be poked, especially many times a day.  It is amazing what having an IPAD can do to calm those fears and distract a child.  Child life brings toys and movies anything that will put a smile on those kids faces.

Oliver spent three weeks in Fargo.  He was finally given a PICC line to help eliminate all the pokes.  His oxygen levels continued to worsen.  It was determined he needed to be sedated to perform a bronch.  They needed to get into his lungs to see what was causing this.  Because of his high oxygen levels, along with his heart condition they knew he needed to be transferred.  Before we left Fargo, Oliver had lost all muscle tone in his legs.  He could no longer stand, walk, or even crawl, and we weren’t even close to being well yet. 

April 29th we were transferred to Children’s Hospital is St Paul.   He pulled through his procedure nicely.  His oxygen levels continued to go up.  We needed to continue to treat that, but also needed to get his strength back.  Because of CMN, they had specialized equipment to help start rebuilding his strength with the help of PT and OT.  They determined Oliver’s muscle tone had become so bad that he would need intense therapy to learn to walk over again.  When he was healthy we would be transferred to Gillette Children’s hospital for intense rehab. 

May 23rd we were transferred to Gillette Children’s hospital.  Oliver’s therapy started day one.  He was fitted for a wheel chair that was just his size!  He was so excited and proud of his chair.  Gillette has the most amazing and state of the art equipment.  They don’t just work on his muscle tone, they worked on getting him ready to return to normal day to day living.  He had Speech, PT, OT, school, psychologist visits, and music therapy every single day.  Because of CMN, they have equipment to make working those muscles fun.  Some days he would be in a gym, sometimes he got to play outside in a beautiful little park.  These activities were hard for him to do but done in a fun playful way.  He loved riding a specialized bike that worked his legs and he felt independent, but they could steer him down the hallways.  Because of CMN, they had bikes in every shape and size for all children.  Gillette even has a specialized pool that is used to regain strength.  Oliver would have loved the pool, but he still had a PICC line, so we were never in the pool.

We were finally released to bring Oliver home June 18th.  Neither Oliver nor I had been home since April 1st.  Oliver did come home in a wheel chair but was able to walk short distances when we came home.  I know for a fact we would not have our Oliver if it weren’t for CMN.  The best doctors in the world cannot do their jobs if they do not have the equipment they need.  Not all sickness need medicine.  In Oliver’s case it is specialized equipment that he needs to keep him breathing.  We are so thankful to everyone who donates to this amazing organization.  CMN is important to more than just the sick child.  Oliver has a sister that loves and adores him more than anything in the world.  When he is hospitalized, it is just as hard on her.  CMN provides toys, playrooms, and crafts so when siblings come they can play together and have some fun not having to think about being sick.