“The Fighter”

“As a baby, she loves the water. She’s a menace, always trying to get out of her crib. She’s playful,” Sonia happily shares and recalls about her daughter Karina. Sonia, the leader of this team, devotes almost all of her time in making sure that Karina gets the medical attention she needs. She admits that the past thirteen years, has not been plain sailing for her with Karina’s situation continuously progressing.

Primarily diagnosed with Cerebral Palsy, a condition that causes physical disability in human development in which symptoms appear during infancy to the preschool years. Karina’s condition, now at 13 years old, has advanced and now accompanied with several other conditions such as encephalopathy, IDDM (Insulin-Dependent Diabetes Mellitus) and other respiratory complications that led to Karina’s tracheostomy and ventilator dependence. Karina suffers from hypotonia or decreased muscle tone and have no movement in her extremities.

ACT has been with Karina since 2006 and we have been a witness to some of the struggles that Sonia have been through. Ensuring that Karina gets adequate medical attention and is able to travel from home to all her appointments with her physician and other specialists was one. Sonia requested from their family and friends and to ACT, to help her with her quest to purchase a van for Karina through “Help Karina get Around” Program.

Quality home health care was another undertaking. Sonia have switched from one home care agency to another. When it comes to Karina’s care, settling is not an option. The importance of closely screening her nurses is emphasized by Sonia to all of ACT.

Several occasions have occurred when 24hours of skilled nursing services was needed due to accommodate Sonia’s own health challenges–surgeries and recovery, thereafter. Most recently, in July 2013, Sonia once again worked with her team for Karina to obtain 24hours of SN services due to her re-excision of chronoid syringoma. She once again reached out to Karina’s primary physician at St. Christopher’s Hospital For Children- Special Needs, to her case manager, and to ACT to ensure that Karina will have continuity of care while she is recovering. Although Sonia repeatedly verbalized that as the mother of Karina, she knows and can take care of her daughter the best, something that we would never contest, but the level of comfort that she has with her ACT nurses are unparalleled. “I’ve known Carmelo [RN Field Supervisor] for such a long time, almost as long as I’ve had Karina. Her nurses, Lisa who’s been with her 7 years, Violet that’s been with us for 3-4 years and Tamara for 2 years…we’ve been a good team.” She even shares, “Lisa and her, they’ll be fighting, they fight all the time, but she smiles later.”

 We recognize that nothing can ever compare to what a mother can do, there are no limits to what they are willing to extend, to what they are willing to go through and how much of themselves they will sacrifice, however, we also understand that we play an essential role not only in Karina’s life but also to her mother Sonia. For this mother and daughter, the support of her home care staff is a staple. And although Karina’s crib-escaping days are over, she remains a fighter, and ACT and our team of nurses together with her mom, are working towards one common goal– for Karina to come out victorious from each battle.

A Smile”

When ACT first met Diona in 2011, she was receiving daytime nursing and home and habilitation overnight. Diona then was a tracheostomy, gtube patient, was non-verbal, non-communicative and had no eye contact. After further skilled assessment, it was determined that Diona will benefit with full time skilled nursing services. ACT’s clinical team together with Diona’s sister, Lynn Mack who has tirelessly been caring for Diona, worked with Diona’s primary physician and supports coordinator and was able to obtain the services she truly needed, 24hours a day, 7days per week of private duty nursing.

On our time with Lynn, she’s verbalized the appreciation that she has for the attention and care that Diona received from an agency that had just entered the care of Diona. Determining the proper care needed for a patient is vital for the improvement of any patient who has special needs’ life. Today, Diona no longer has a trach, can occasionally eat PO. With her full time care, she is able to go out in the community such as bowling, museums, aquarium and flower shows accompanied with ACT staff. One of the biggest gift ACT has received from Diona, is the smile she gave us during our visit. Once non-communicative, and had no eye contact, seeing her interact and smile for the camera is one of the reasons why ACT continues to do what we do, and why ACT continues to strive to improve the quality of care we provide.