Demi's Dream

***Latest Update 9/1/23***

A lot has happened in the past 5 weeks. She’s made great strides with her lungs after they inserted 3 one-way valves to help minimize her air leak. Last week (8/22/23) Demi went Code Blue when suddenly she dumped nearly 2 liters of blood from her right chest tubes. Her sats dropped to 71 and they had to give her plenty of blood. They stabilized her and she went for a Cath within 48 hours. She was doing great after that until today when she went Code Blue again. While in the OR for a tracheostomy, they first removed her pacing wires. Then while removing her left chest tube, she dumped 3.5 liters of blood into her right mediastinal chest tube. They had to perform CPR for over a minute and were able to resuscitate her. They’re giving her a lot of blood black, and she’s currently heavily sedated and paralyzed for her safety. Pls pray and ask your friends’ friends to #PrayForDemi

***Update 7/23/23***

Demi continues to heal slowly despite some setbacks and new complications. She had her 10th and 11th bronchoscopy on 7/18/23 and 7/23/23. Within a week they will attempt to reinflate her right lung, which has been collapsed for 6+ weeks, as the team continues trying to salvage the left lung while letting the bronchus injury heal. Future surgical plans still TBD. Continued prayers for healing of her bronchus and recovery of her lungs.

***Update 7/12/23***

Demi’s body is healing slowly. She remains on life support, but her heart is pumping strong. She had her 9th bronchoscopy and 2nd catheterization on 7/10/23. Her lungs have a longer road to recovery. Future surgical plans still TBD. Specific prayers for healing of hole in her bronchus, left lung, and collapsed right lung.

***Update 7/4/23***

Demi's had a total of 9 surgeries and 6 bronchoscopies in 22 days. She had another bronchoscopy last week (7/2/23) and a CT-Scan today. She's been on full life support for a month. Her right lung remains fully collapsed, and the left lung is trying to make a comeback. The hole in her right bronchus is unchanged, but the infection is now under control. Future surgical plans will be discussed this week. Continued prayers for Demi's health!

***Update 6/24/23***

Demi’s infection morphed into a case of severe sepsis. She’s had a really rough week. She just came back from the OR today—her 3rd surgery this week (6/19/23 and 6/21/23). Her right lung is officially collapsed, and she has a hole in her right bronchus. Demi continues fighting the infection, which is the medical team’s top priority. She remains on full life support. Continued prayers needed!

***Update 6/17/23***

Demi developed an infection that is very concerning. The infection is prominent in the right lung where she had already lost a portion of it. The infectious-disease team is aggressively attacking the infection with antibiotics/antifungal and will monitor Demi closely for a minimum of 4 weeks. A balloon was inserted into her the right mid & lower lobe of the right lung during her bronchoscopy. Extra prayers to salvage the right lung and eradicate the infection!

***Update 6/12/23***

Demi's June 6th and 7th open-heart surgery lasted 30 hours, followed by a 7-hour surgery on June 9th. Demi remains on life support and is fighting hard to get off the heart-lung machine (ECMO) and the ventilator. Her lungs are sick, so the medical personnel at Stanford Childrens Health are gradually trying to wean her off the ECMO. Your continued prayers are needed!

***Update 6/7/23***

Demi was taken into operating room yesterday, 6/6/23, at 8:00am for her pulmonary artery reconstruction surgery. It has now been over 24 hours and the surgical team continues to work diligently on her heart and lungs as previously planned. Once surgery is complete, we will update in more detail. For now, please continue to keep Demi, her family, and the surgical team in your fervent prayers.

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My youngest niece, Demi, was born with a rare heart defect: Tetralogy of Fallot with Pulmonary Atresia and MAPCA's. Her journey since birth has been challenging, as she has endured multiple open-heart surgeries and countless cardiac catheterizations. Yet, in typical Demi fashion, she takes it all in with a smile and positive outlook.

Demi's dream is to wake up one day and have a "fixed heart" with her family by her side. Her forthcoming open-heart surgery is the next step to fulfilling her dream. Demi, along with her parents are currently in Stanford, California where they continue meeting with the medical team who are the only qualified specialists in the world able to appropriately address her severe heart defect. Demi, who turned 13 at Stanford Childrens Hospital, will be staying in California for an unknown period of time as she continues receiving the necessary care to avoid a heart-lung transplant.

Demi's parents left behind 3 boys who are being cared for by a combination of family members so they can focus on taking care of Demi. Between relocation expenses, regular ongoing expenses, and uncovered medical expenses, Demi's family could really use the support of others during this difficult time.

Please keep Demi, her 3 brothers, and her parents in your prayers and consider donating any amount possible to help alleviate their financial burden!