Their bills are going to be coming in, if they haven't already and I really wanted to make sure finances were the last thing on their minds, as they focus 100% on Greyson and his care.
Greyson's Story told by Candace Walls
In March 2020, while the world was focused on the COVID-19 Pandemic, the Walls family was focused on their son Greyson. Following their anatomy scan at 22 weeks pregnancy, they were given news that their sweet baby boy had limbs measuring short and bowed legs. This was consistent with the diagnosis of Skeletal Dysplasia (dwarfism).
To determine if Greyson had a lethal or non-lethal type of Skeletal Dysplasia they had genetic testing completed. At this point their providers did not have a reason to believe that Greyson had a lethal diagnosis. Unfortunately, the genetic testing came back with a devastating diagnosis, Osteogenesis Imperfecta (Brittle Bone Disease), commonly called OI. Greyson’s diagnosis was the result of a spontaneous mutation, meaning that Candace and Scott did not have the genes in their genetic makeup.
OI, is a rare disorder that affects the bone strength and tissue structure. Although OI is known for the fragile makeup of the bones it also comes with a number of complications that include (OI Foundation):
Larger Skull circumference
OI is broken into types based on the severity. Greyson is Type III and is on the moderate to severe scale. Type III is described as a severe form of OI.
This is where Greyson’s journey began. He was being closely monitored by Penn State Health. Candace was going to weekly testing appointments with the knowledge that at any point she could be admitted to Labor and Delivery. Due to COVID, she had to attend these appointments alone.
In May 2020, at 30 weeks pregnant Greyson developed a Pericardial Effusion and a Pleural Effusion that resulted in a one week observation stay at Penn State Health. Luckily, Greyson was stable enough that he could be monitored in an outpatient setting.
At 33 weeks pregnancy on May 26th, 2020, Candace was again admitted to Labor and Delivery. What was supposed to be just another observation stay, turned into something much more. At 11pm Candace’s water broke! The decision was made to do a c-section the next morning to ensure that the contractions would not cause any breaks.
On May 27th, 2020, what was supposed to be a standard c-section turned into an emergency when Greyson’s heart rate dropped. Greyson made his dramatic entrance at 11:40 AM, weighing 4lbs and was 14 inches long. Greyson was immediately intubated and taken to the NICU. Scott followed Greyson to the NICU while Candace was still on the OR table getting closed up. After a couple of hours in recovery Scott was finally able to take Candace to see their beautiful baby boy.
The Penn State Health NICU team consulted with the Orthopedics department and it was decided that Greyson should be transported to Nemours/Alfred I. duPont Hospital for Children in Wilmington Delaware. At Nemours they have a department dedicated to the OI diagnosis. Due to Greysons prematurity and diagnosis it was appropriate to transfer his care. Greyson was transferred at just 2 days old while Candace was still inpatient at Penn State Health recovering from her classical c-section. While Candace was healing, Scott traveled almost an hour and a half to Nemours to ensure he was there to advocate for Greyson.
Due to COVID-19 only one parent was permitted to visit the NICU. Luckily, the NICU made an exception so Scott could bring Candace to see their son, since Candace could not drive. Once Candace was cleared to drive, Scott was no longer permitted to visit the NICU. Fortunately, the visitation rules were updated to allow 2 healthy parents to visit. There were limited options for lodging since the Ronald Mcdonald House was closed due to COVID-19, so Candace drove everyday to see Greyson and Scott would visit while working full time.
While at Nemours, Greyson spent 114 days in the NICU. During his stay, Greyson reached many milestones but also had many setbacks. Candace and Scott were not able to hold Greyson until about 2 weeks after he was born. They were only able to hold their little fighter’s hand and stroke his little forehead. When they were finally able to hold Greyson it was on a foam egg crate mattress. After his second round of Pamidronate infusions they were finally able to hold him without the egg crate.
Greyson was in the NICU long enough to receive 3 rounds of Pamidronate (Bone Juice), to strengthen his bones. He was born with fractures in his legs and ribs with only one known fracture while in the NICU. Greyson had a lot of complications while in the NICU with his respiratory status. He was on the lowest settings on his vent but failed extubation twice before he was finally strong enough to breath on CPAP. Due to Greyson’s complex respiratory background it was determined that he had Chronic Respiratory Failure with Hypoxia and Hypercapnia. This meant he would need additional respiratory support while at home.
Once Greyson’s respiratory issues were under control the discussions for discharge began. This again was a challenging time. Greyson was set to be discharged on 3 separate occasions. Each time he was set to be discharged something would occur. First, Greyson had a GI bug that caused him to go into respiratory distress. This caused his respiratory support to increase. The second attempt Greyson had periodic cardiac arrest events. These events resulted in his heart rate dropping to 0, but it would come right back up to normal range. The Cardiology team determined that Greyson had an overactive vagal nerve that could be treated with medication. After allowing the medication to work for a couple of days, the time for discharge finally came.
Greyson was discharged from the Nemours NICU September 17th, 2020. He went home with a feeding tube and CPAP. The first couple of days Greyson was thriving at home, enjoying his time with his puppy Brodie and snuggling with his grandparents that he met for the first time. Unfortunately, Greyson had a series of events occur while at home that result in an emergency.
On Greyson’s 4 month birthday, September 27th, 2020, during the early hours Greyson started to desat. This meant that his blood oxygen saturation was dropping below 92%. While this occurred his oxygen support had increased from 2-3 liters of oxygen to 5 liters. Calls were made to the on call Pulmonologist who advised Candace and Scott to bring Greyson into the ER at Nemours. While they were getting ready and packing the car, Greyson’s heart rate started to drop significantly. His heart rate was in the 50’s and they were only able to keep his heart rate in the 90’s while massaging his chest.
Knowing they could not stabilize Greyson, they called 911. Greyson was taken to Penn State Health, where he was stabilized. Once Greyson was stabilized, the decision was made to have Greyson flown to Nemours where his complex care was already being managed. Greyson was admitted the Nemours PICU under the care of the PICU, Pulmonology and the OI team.
Greyson was diagnosed with Acute Chronic Respiratory Failure. In addition, he had new rib fractures, healing right arm fractures and new right femur fracture from where his central line was placed.
It wasn’t until the next day where plans were starting to form. Meanwhile Greyson’s respiratory status began to decline. The x-rays showed that Greyson’s lungs looked cloudy. The care team ran 2 respiratory panels to ensure that Greyson did not have a virus or COVID-19. Thankfully, they came back negative. It was determined that Greyson most likely aspirated and that was the cause of his respiratory failure. He was transitioned to BIPAP for more support but it was determined he needed more.
The decision was made to intubate Greyson. There are many risks when intubating children with OI, which could result in paralysis. Fortunately, the decision was made to have Anesthesiology come down and do the intubation in a safe controlled environment to avoid any injuries.
The goal of intubation is to give Greyson the support he needs while his ribs heal. At this point it is all about pain control. Greyson is not out of the woods yet. He will be admitted for a couple of weeks. They will wean his vent settings and work toward the goal of extubating. Since extubating is the goal there is always a risk his little body cannot handle it. Because of this possible set back there are ongoing discussions to place a trach.
Greyson is currently stable and sedated to give him the best fighting chance.
Candace is now staying at the Ronald Mcdonald House full-time while Scottie travels back and forth between the hospital, work and home.