Medicaid 101 Policy Academy: Asah Thaddeus See

ASAH THADDEUS SEE

Asah = strong, working, healer, doctor Thaddeus = courageous heart

• Asah Thaddeus See was born on September 15, 2016 at Barnes Hospital weighing 7lbs 2oz. • On this date, it was confirmed that Asah has Hypo Plastic Left Heart Syndrome and Supra Cardiac Total Anomalous Pulmonary Veinous Connection.

• Asah had his first open heart surgery at just 4 days old. Asah had his TAPVR repair on his pulmonary veins and a Norwood surgery to redirect the flow of blood in his heart. Asah had an extended chest closure due to swelling in his little body. Asah’s parents could see his heart beating below the thin layer of Tegaderm.

On October 20, 2016, just 5 weeks after he was born, Asah was able to go home!

• On December 12, 2016, Asah was taken by ambulance to Hannibal Regional Hospital with dangerously low oxygen saturations. He was quickly life flighted to St. Louis Children’s Hospital where he underwent his 3rd heart cath and was diagnosed with Pulmonary Vein Stenosis. This is a rare, aggressive and progressive disease of the pulmonary veins that causes narrowing in the veins that lead to the lungs and heart.

On December 20th, 2016 Asah underwent his second open heart surgery. Asah had a Glenn Procedure on his heart and a Marsupialization of his pulmonary veins to the back side of his heart, also called a suture less repair.

Asah had a very rough recovery after his 2nd open heart surgery. His left diaphragm was determined to be paralyzed and causing him pain. He was also unable to fully inflate his left lung. He required a Plication surgery to tack down his diaphragm so that his left lung could inflate.

In February 2017 it was determined that Asah would not breathe on his own without the support of a ventilator. Asah was also classified as high risk for aspiration due to a paralyzed diaphragm and left vocal chord so he is not able to eat food by mouth. On February 15, 2017 Asah had surgery to have a tracheostomy and gastric button placed. This surgery was very hard on Asah’s little body and he crashed three times after surgery.

April 19, 2017 Asah underwent his 5th heart cath. This was necessary because Asah’s Pulmonary Vein Stenosis was causing high pressure in his veins and heart. Asah is currently taking 2 medications to treat his Pulmonary Vein Stenosis amongst the 5 other medications he takes for his heart each day, 4 times a day.

DISCHARGE DAY 6/7/17!!!

Asah spent a total of 214 days inpatient at SLCH from 9/15/16 to 6/7/17!

Asah thriving at home! Asah even got to celebrate his 1st Birthday in true super hero fashion!!

Asah begins to hit developmental milestones! Asah receives therapy in his home 2 times a week through his First Steps services.

April 2018 Asah has his 6th Heart Cath to dilate his pulmonary veins and his Innominate Artery. Asah was later admitted to SLCH for low oxygen saturations. His team of doctors have determined that he will need to undergo a 3 rd open heart surgery when his oxygen saturations are under 70 on a regular basis which could be at any time now.

April 2018 – Asah is a happy, growing 1 year old boy who loves to be outdoors, watch the Ellen Show and cheer on his favorite team, the St. Louis Cardinal’s.

A little about Asah’s daily care‌Asah’s trach is changed every 3 to 5 days. It requires two people to change his trach and sometimes he vomits or turns purple during his changes.

Trach tie bags are also prepared by his mother and grandmother that are filled with cotton swabs, sterile compress, cut trach tie, inter dry, Mepilex and vinegar water for cleansing.

Asah’s medical regimen is intense and there is no room for error.

• Asah requires 1-3 liters of oxygen and uses a concentrator or tanks.

• Asah requires several medications for his heart.

• Some of Asah’s monthly supplies include: nourish prepared food, feed bags, syringes, g button supplies for cleaning and changing, two traches, trach water, heated and non heated vent circuits, filters, suction catheters, whisper swivel, adapters, suction canisters with tubing, split gauze, pulse ox probes and tape, cotton swabs, trach ties, and mepilex

Asah requires a ventilator 24 hours a day with a humidifier.

The ventilator helps Asah with his breathing and allows his body to rest.

Asah can only take prepared food through his gastric button which is fed by a food pump.

Asah’s heart rate is monitored non-stop, 24 hours a day with a heart rate and pulse ox machine.

When you interact with Asah and his big grin, you don’t see the chords and machines that follow him wherever he goes. Asah is somebody’s son and grandson, Asah is a little boy who has climbed big mountains and defied the odds. Asah is a little boy who desperately needs a Lopez Waiver in order to continue climbing those big mountains.