Family caregivers are an essential component of the work that Independence Plus, Inc. (IPI) does to provide the best possible care for our medically complex, ventilator-dependent patients. While their job is not always easy, devoted caregivers can make a profound difference in the lives of their loved ones.
Kayla and her husband Kevin are two such people. Their son KJ was born just shy of 26 gestational weeks. He spent a year and a half in the hospital, before coming home with IPI’s skilled hourly home nursing in May 2015. Since that time he has made great progress. He is a happy and playful little boy who will celebrate his third birthday next week!
We spoke with Kayla about how she balances being a mother and a caregiver, what advice she has for families going through similar situations, and where she finds her strength.
Q: Your son was born at 26 weeks and spent almost a year and a half in the hospital. Tell us a little bit about how KJ (and the rest of your family!) is doing, and how you balance being a mother and a caregiver.
A: KJ is doing so well! Since being home he is off the ventilator in the daytime, even at naps, and is just on the vent at night. When he came home he was 24 hours on the ventilator. He was taken off of two of the diuretics he was on, weaned off of oxygen, and went from being a one-year-old who could not sit up to an almost three-year-old who is crawling, sitting up and almost walking now.
Balancing life as a mother and caregiver… hmmm. Well as a mother I feel it’s good when your baby is in the hospital to learn all about what care is needed for your child, and then it’s not so much a balancing act, but a part of motherhood. As mothers, we have to learn so many things based off of situations that come. For me and my husband this was our situation and we set our minds to learn all we can for our son’s care.
Q: Most caregivers say it ‘takes a village’ to keep things running smoothly for their families. How large is your support system and what is a typical day like for KJ?
A: Our village is a good size, and let me tell you, we included whatever nurses KJ came in contact with, even in the hospital. I still get questions from KJ’s birth hospital of nurses asking how he is doing! We are ever so grateful for the help we have because it enables us to work and provide what is needed for our son’s care–including insurance, which is very important!
On a typical day, KJ wakes up at 5:30 am, which is the time my husband and I get up to get ready for work. He watches an educational movie like Leap Frog or Sesame Street and then the nurses arrive at 6:30 am. He has his meds given around 9:00 am and then gets his bath. After bath time he may take a nap, and if not, he gets his feedings and he has play time with the nurses until he naps. After naps we try to put in one of his favorite movies (which seems like Finding Nemo takes the cake!), and he may play in his room or in the living room. He also gets his bolus feeds in between this time and when we arrive home, when of course we have to play with him because he’s excited to see us home! Or if he’s watching a movie, he will gladly give us five minutes of his attention before going back to watching his movie (ha ha)!
Q: How long has your family been working with Independence Plus? And what would you tell people about the importance of home health care?
A: We have been with IPI since May of 2015 (when KJ first came home from the hospital). Home healthcare is important to help with your child’s success. Always work with the nurses, teaching them your preferences with your child because after all you know your child the best! You know what they don’t like, their quirks, and in the end this helps keep your child’s day with the nurse consistent with what they get with you, the parents!
Q: You have the unique perspective of being a nurse and also having had to rely on nurses to help care for your son in your home. What qualities do you appreciate in a home health nurse?
A: I appreciate nurses who are like me! We have the pleasure of having some nurses who have graduated from the same nursing school I did, some two years after I graduated! Also I feel with our nurses knowing that I am a nurse they have a mutual respect for my career and know what I go through at work! I will say it made things a bit easier when KJ was in the hospital to understand things but as a mother it was still hard. I am thankful because I never knew God would use me in such a way for my own son. I also have a mutual respect for the nurses! We just understand each other in so many ways.
Q: What advice do you have for families going through situations similar to yours?
A: Be the teachers! I know what doctor’s orders say but you are your child’s main advocate and you know your child best! Teach the nurses about your child and it makes it easier for their approach and care for your child. Don’t be afraid to correct, it doesn’t matter if you yourself are not a medical professional, you are a parent and that’s enough experience. Work together as a unit because your child can succeed! And that’s why it takes a village to raise a child whether they are a special needs child or not.
Q: Navigating the world with a family member who has to travel with medical equipment can sometimes be tricky. How has that been for you and is there anything you would you like to see changed in order to better accommodate the needs of people with physical disabilities?
A: The vents and oxygen are sooooo heavy, I would love to see more compact vents to help parents carry all of those things and more progress with strollers would help, too. We had a stroller but it was the one with so many straps for my son and though it helped with his posture in the beginning, as he got older and sat up on his own and was moving around, we just didn’t use it. The base of the stroller would have been awesome if it was compatible with other seats.
Q: Caregivers like yourself show so much strength and perseverance when it comes to getting the best possible care for their loved one. What gives you strength?
A: My strength comes from God, point blank period. I cannot tell you how we got through the times with KJ where he coded and we didn’t know if he was going to make it, with his CO2 levels being above 100, vomiting so much that he was barely gaining weight, being on different vents and paralytics, surgeries … my only answer is God. My faith community has prayed for KJ ever since they found out I was pregnant. God has brought us through and continues to do so.
To read IPI’s first blog about KJ and his family – ‘A Blessing at 25 Weeks’ – please click here.
What IPI staff members have to say about Kayla:
“Kayla is a true advocate for her son. She works with her son’s nurses to ensure he receives the best care possible.” – Marcheta, IPI’s Senior Healthcare Scheduler.
“What I like about Kayla is that although she knows her child and his patterns/routines, she’s very open to his nurse’s suggestions regarding his care – from music and child development, to ways of providing oral care or of maintaining equipment. She’s a nurse herself, so her being receptive in this manner makes me feel great because I truly feel that we’re a team, which we are… we’re Team KJ.” – Marquina, MSN, RN, CNL, an Independence Plus Field Nurse.