Most 10-year-olds spent Christmas break looking forward to time away from school and wondering what awaited them under the Christmas tree. For Elgin’s Gracie Mace, daughter of Jessica and Travis Mace, improved health in 2015 was the best gift she could receive. It couldn’t be wrapped, it didn’t fit under her tree and it didn’t come easy either. On Sunday, Gracie, along with her mother and aunt LeAnne Cole of Albion, shared their story of the roller coaster ride that the family was taken on just before Christmas.
Congenital Heart Defect
According to her mother, Jessica Mace, Gracie was diagnosed with Pulminary Valve Stenosis (PVS) within hours of her birth. PVS is a condition in which a deformity either on or near the pulmonary valve restricts the blood flow from the heart to the lungs. Baby Gracie was diagnosed when the medical staff detected a heart abnormality. “She had a very bad heart murmur,” Jessica said.
The following year, December 23, 2005 to be exact, toddler Gracie underwent a Balloon Valvuloplasty at Children’s Hospital in Omaha. The procedure used a catheter inserted through an artery to inflate a balloon which widened the valve opening. Following the outpatient procedure, the family began regular visits with Pediatric Cardiologist Dr. Eyad Najdawi in Sioux City, IA.
“We began (checkups) every six months,” said Jessica. “Then we went to yearly (checkups).” After the doctor skipped a year, Gracie had her latest appointment this fall…”November 11th”, said Gracie. An echocardiogram done that day showed a significant change in her heart function.
“Her systolic pressure (upper blood pressure number) was at 74. The normal should be at 20-30,” Jessica said, which indicated that her heart was working harder than normal. At that point, Gracie was put on high blood pressure medication.
“She was diagnosed with Subpulmonary Stenosis due to Anomalous,” explained Jessica. In layman’s terms, that means that the artery that allows blood flow from the right heart ventricle to the lungs had narrowed significantly. The procedure to correct the Subpulmonary Stenosis involves physically going into the heart and removing the tissue that is obstructing the artery.
Originally, Dr. Najdawi thought that the surgery could possibly be done this upcoming summer. Fortunately for Gracie, the family decided to have the surgery done sooner than later.
Open Heart Surgery
After arriving at Children’s Hospital at 5:30 a.m. on Wednesday, December 17, family members wished Gracie well as she was wheeled off to surgery around 8 a.m. According to messages that the family shared with other family and friends, Cardiothoracic Surgeon Dr. Ibrahim Abdullah began the open heart surgery at 9:32 a.m.
What was scheduled to be a five hour surgery stretched out as the day went. Jessica’s nerves were also stretched to their limits.
“I was okay the first five hours,” she said. “They were very nice to call me every hour, the first five hours. After the five hours….I’m a nervous person anyway, I was freaking out once it came closer (to the planned time) and I’m not hearing anything. I’m in the hallways, staring down the OR room. Nurses are coming out ‘are you okay?’. No, I’m not okay. I want to know what’s going on!”
“Finally, they said they had to put a patch on (the artery). They tried the pig (tissue) one first but I didn’t know that so I’m freaking out. He told us the patch would only take 15 minutes.” Later they would find out that Gracie’s body rejected the pig tissue patch, so the surgeon next tried a donor tissue patch which it also rejected. Eventually, tissue was taken from Gracie herself to create the patch. They also learned following the surgery that echocardiograms had to be taken between each patch attempt to test if her body was rejecting the patch. In order to do an “echo”, Gracie’s body had to be taken off the bypass. Essentially, Gracie had three bypasses that day.
Cole, who stepped in to help get the information from the nurses as Jessica became more concerned, explained that the nurses were keeping their updates fairly generic.
“He’s still sewing, he’s still sewing, he’s still sewing the patch on.” is what the nurses would say. “We didn’t know what to expect because now it’s getting even longer and longer. It came down to the fact that he didn’t start to close her chest until 9:36 p.m.”
“After he closed her chest, we saw him (Dr. Abdullah) at about 10:30,” Jessica said. “He said that this was a lot worse than what they thought. It (the constricted area) was very, very close together. If that closes, you have a heart attack.” The surgeon also found some unexcited, additional constrictions. Cole said he ended up have to re-route her pulmonary valve and repair the tricuspid valve.
Recovery
As if over 12 hours in surgery wasn’t enough, Gracie’s recovery also had its ups and down.
After arriving in ICU around 11:30 p.m. Wednesday, the hospital staff struggled to keep her blood pressure from dropping. At one point it dropped to 50/34 so, ultimately, they ended up giving her three units of blood through the course of the night to get it stabilized. “She just lost a lot of blood during surgery is what they told me after,” Jessica explained. “So then she didn’t have as much blood as her body is used to which was making her blood pressure drop.”
Gracie’s body was also running a fever, averaging between 101 and 102.5 degrees, and even though she would talk and motion with her hands, she wouldn’t open her eyes at any time on Thursday. Around 11:30 p.m. on Thursday, Jessica encouraged the hospital staff to remove the ventilator which Gracie had been complaining about. “The ventilator was the worse part because she shook,” she said. “She wanted it out”.
On Friday, the decision was made to take her off all the medications except for her blood pressure meds. She had fluid on her lungs, causing a collapsed lung. As part of the surgery process, Gracie had been given an adult dose of Fentanol (also known as Fentanyl), a common anesthesia. As Jessica and LeAnne explained it, since Fentanol enters tissue, it was taking much longer for it to work out of her system. Friday afternoon, Gracie still isn’t opening her eyes.
Saturday morning, Dr. Abdullah stopped in to check on Gracie. She was more alert and had her eyes open. Dr. Abdullah told the hospital staff it was time to get her out of the bed, moving and out of ICU. Following a sponge bath, Gracie set off on a walk that afternoon. She completed it (halfway around the ICU) but was exhausted and went back to sleep. Around 6 p.m. she was moved to the fifth floor.
On Sunday, Gracie had family and friends stop by to visit. Sunday, Monday and Tuesday appeared to be good days for her. She ate her first solid foods (“She ate chicken nuggets from McDonalds,” LeAnne said). She was drinking and walking although she was still lethargic which had staff concerned.
Tuesday night, Gracie was taken back into surgery. While she had drainage tubes that managed the fluid in her lungs, fluid was accumulating on her lungs. A drainage tube was inserted in her right side to remove that fluid. According to LeAnne and Jessica, a total of over 600 cc’s of fluid drained off her lungs, 355 within the first half hour.
Finally, one week after arriving at Children’s Hospital, it looked like Gracie and her family could come home. Gracie first had an X-ray to check on the fluid on her lungs. All appeared well so the drainage tube was removed. Another echocardiogram that morning showed that her heart tissue was a little swollen “but otherwise looked good,” Jessica said. After setting up a followup appointment with Dr. Najdawi on Friday, Dec. 26, Gracie was finally dismissed. Her Friday appointment showed that everything looked good and they were able to cut back on her blood pressure medication.
When asked if she was ready to go back to school, Gracie gave a quick “no” but she did it with a big smile as her mom knodded “yes”. She’ll need to take it easy for awhile, she can’t do recess and can’t be around anyone who is sick. According to Jessica, even the specialist don’t know what may be next for Gracie. They’re likely not done following this surgery. “We had been told that what she had before (PVS), which they haven’t fixed, is going to affect her more as an adult – a young adult to an adult. She was told that she probably won’t be able to have children.” The surgeon, Dr. Abdullah, assured them that he would be her doctor the rest of her life.
You Can Help
The whole family is grateful for all the support and encouragement they have received so far from friends, other family members and the community. “The school was great. The classes sent cards, it was great for her,” Jessica shared.
The Mace family also wanted to express the family’s gratitude for money that they have been given. “The financial support that we’ve received has helped so much,” she said. “I’m not working right now, only on weekends when Travis can be here. It’s help with gas to go back and forth (with the appointments and hospital) and with our bills.”
If you would like to help the Mace family, an account has been set up at the Bank of Elgin. Also, a gofundme account has been set up online, Grace Mace Fund at http://www.gofundme.com/itz0xg
