Rula Robinson, heading home on Nov. 12, after a long hospitalization
It was Nov. 12 when little Rula Robinson was being discharged from Akron Children’s but already Christmas was on everyone’s mind.
Rula had been in the hospital 238 days, but she would be home for Christmas. She would be with mom and dad, Sydney and Patrick, and her three big sisters – Arabella, Theia and Layla. The family would be together.
“I am mostly excited to be home for the holidays,” said Sydney, at Rula’s emotional home-going. “Every time we thought we had an end in sight, Rula kept throwing curves into our plan to get home.”
One by one, nurses, therapists and other providers began gathering around the nursing station outside of Rula’s room wearing “Rally with Rula” sweatshirts.
A signed banner declared, “Rula, You’re Our Hero” was outstretched.
Just before the family’s official parade out of the unit – with Rula in her father’s arms – bubbles began dancing the air, and Sydney exchanged hugs with each member of a care team that had spent months getting to know her family.
Then, just to assure tears would flow, child life special Sarah Gurbal’s clicked on her smartphone and “Frank Sinatra began crooning “I’m Dreaming of a White Christmas.”
A partial representation of “Team Rula”
Rula, now 11 months, was born in January and had her first hospitalization for seizures on Feb. 20. She was discharged home but re-admitted three days later to the pediatric intensive care unit (PICU) for uncontrollable seizures. She was diagnosed with intractable epilepsy, put on multiple medications and intubated.
Just as her seizures came under control, Rula’s gut stop working and perforated. She was rushed to the operating room. It happened again two weeks later.
The Robinson, of Brunswick, family, heading home!
Rula got to know providers throughout the hospital during her first year, including PICU, GI, NDSC, and surgery.
“She was on chronic total parenteral nutrition (TPN) [a treatment that provides nutrition intravenously to patients with impaired gastrointestinal function], when seizures restarted,” said Randi Korman, RN, Rula’s PICU case manager. “A keto diet with TPN was attempted as a way to control seizures, but it was determined not safe for her young age and how many nutrients she needed to grow. When foods were introduced again, she had another perforation and required yet another surgical repair.”
Rula bounced back and forth between the PICU and the hospital’s transitional care floor during her long hospitalization, and, unfortunately, more medical procedures were added to her medical history – total colectomy, ileostomy, gastrostomy-tube (G-tube).
“Then we restarted feeds through her G-tube when she stopped tolerating those again. So, after the amount of time it was safe, they put in a gastrojejunostomy (GJ) tube, so they could feed her directly into the stomach and the small intestine. She continued to have seizures and got a vagus nerve stimulator (VNS) placed in August,” said Korman.
The VNS is an implanted device that sends regular, mild pulses of electrical energy to the brainstem through the vagus nerve in your neck.
Sydney attributes the VNS to helping Rula recover more quickly from recent illnesses. Over time, she hopes it will help her wean off many of her epilepsy medications and help her get back on track in hitting her developmental milestones.
“The VNS is like a pacemaker for the brain that works 24/7 and overtime modulates brain activity,” said Dr. Lucyna Zawadzki, a pediatric epileptologist at Akron Children’s. “We are hopeful that, for Rula, that would mean less seizures and less medication in the future and with that better quality of life.”
After 238 days in the hospital, Sydney was so excited for their first night home – having a family meal with Rula home and back with her three older sisters, who are 11, 7 and 5. Sydney’s mom was making a family favorite: Chicken Paprikash.
Rula had a brief return to the hospital in early December for a respiratory illness.
“Even the common cold knocks her down 12 times harder than a normal kiddo,” said Sydney.
This brief hospitalization aside, Sydney said the family has been spending most of November and December spending “a lot of quality time together, having good family moments, playing games, all that good stuff.”
The Robinson sisters have been treasuring their moments having baby sister Rula home for the holidays.
They got their tree the day after Thanksgiving and have been having hot chocolate bars, driving to see light displays, watching movies and having themed dinners.
“The girls have really enjoyed having Rula there,” said Sydney. “They love doing her hair and playing dolls with her. She is like one of their dolls – it’s really quite funny. I am so thankful to be home for the holidays.”
Board games, movies, the Robinson family has been enjoying the precious family time together since Rula has been home.
Even the Grinch was nice to Rula! The family making lots of holiday memories this year.
Igloo dining!
Matching PJs!
