Levi Ward Tyler

Hypoplastic Left Heart Syndrome (HLHS)

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Levi Ward Tyler's Bio

Levi was born with Hypoplastic Left heart syndrome ( HLHS). The left side of his heart did not develop normally so he has went through a series of 3 open heart surgeries to help his heart function with only 2 chambers instead of the normal 4. The 1st one at 4 days old, the 2nd at 5 months old and he just recently had his 3rd  this past August. He also had to have a diaphragm plication surgery at 11 days old. He developed bacterial menegitis from a blood infection in his PICC line and grew ecoli in his urine at 6 weeks old. He became septic and ended up having watershed strokes (6 of them) and those strokes led to seizures. He spent 10 weeks in the hospital after birth.  He has had 2 heart cath procedures, the 2nd one was this past July. It was to prepare for his 3rd open heart surgery. The hospital stay was only supposed to be 24hrs but turned into a week long stay. Levi had a blood clot travel to his brain and caused him to have 4 strokes, 2 of them major.

When Levi woke up he was completely blind for 3 days. After giving him a few days to just rest, his vision slowly started to return. He is only 2 so its hard to say if his vision is as good as it was before the strokes but he is able to see and he doesn’t let anything stop him from running around like a normal 2 year old. After these strokes Levi underwent lots of testing and had a lot of lab work done. The results came back showing that Levi has 5 different blood clotting disorders. He now has to be on double blood thinners to keep him from having anymore strokes. He takes aspirin twice a day and he also has to get Lovenox injections twice daily. Being on double blood thinners can be risky when you are so young. We have to watch him closely if he hits his head on anything or if he falls. He is at risk for a brain bleed or internal bleeding. We carry bandaids and pressure bandages, along with emergency seizure medicine wherever we go. Plus a packet with all his doctors and specialist phone numbers. Levi also has a medical alert bracelet. He is enrolled in 5 different therapies at this time. Physical therapy,  occupational therapy, feeding therapy, speech therapy and vision therapy. He also has to get bloodwork done several times a month to make sure his Lovenox levels are staying where they need to be to keep him protected. They also frequently test to make sure his body is still responding to aspirin the way it should.  Levi is followed by Cardiology, neurology, hematology,  developmental clinic and has many check up appointments with his pediatrician.

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