At the age of 8 months, a Watertown boy named Lucca needed an emergency tracheotomy and now he requires round-the-clock nursing care. His family has found, however, that there are not enough in-home care nurses available to meet his needs.
Lucca must have fluids suctioned every half hour to keep his airways clear. He has been authorized to receive 63 hours of in-home nursing care each week, and his family mostly uses the nurses at night so they can sleep, according to his family.
Massachusetts faces a shortage of Continuous Skilled Nursing care, in part because of the low pay rates (often $20 an hour or less) due to the state’s reimbursement rate.
An amendment, number 769, to the State Budget asking for $16 million to increase the reimbursement rate for continuous care for medically complex children and adults. It currently in front of committees on Beacon Hill.
The MA Pediatric Home Nursing Care Campaign has started an effort to gain support for the adoption of the budget amendment.
Lucca’s grandmother, Peggy Quilty, wrote the following piece about her family’s struggles:
My beautiful 22-month-old grandson Lucca, had an emergency tracheotomy eight months ago after having prolonged breathing difficulty and several bouts of bronchiolitis. It was discovered his airway was 80% to 90% closed. This resulted in a month long hospital stay and ended with him going home with a tracheostomy, requiring round-the-clock nursing care after discharge. I am writing this to save my daughter and son in law time, but assure you, they will approve what I have written!
In subsequent months, he has had two additional surgeries to correct another congenital anomaly that is causing fluid to enter his lungs when he drinks. These surgeries resulted in his needing to be spoon fed a thickened liquid diet with follow up swallow tests. He still needs to be watched closely to be sure he does not choke while eating or drinking. Lucca needs to be suctioned frequently throughout the day (anywhere from every 10-40 minutes) to keep his airway clear and several times at night as well. Due to his compromised airway he is highly susceptible to respiratory infections. He needs special trach site care twice daily along with nebulizer treatments to keep his secretions thinned and monthly RSV vaccinations so that his immune system is not compromised.
He sleeps connected to a monitor to track his vital signs and receives an oxygenated mist to keep his airway moist. Because he is an active and curious toddler, he needs to be observed constantly to be sure he does not obstruct his airway while playing.
My daughter and son-in-law are authorized for 63 hours of in-home nursing care each week, they are constantly struggling to find qualified nurses to care for their son and are often unable to fill the 63 hours due to the lack of skilled nurses available to them. They have had up to 80 hours banked at one time, that went unused due to the agencies inability to find nurses. They save any nursing hours they have for nights so that they can get sleep. Currently, they are juggling between 2 different nursing agencies to piece together enough nurses to care for Lucca. They have had 14 different nurses to date, so there has been little consistency in his care. The pay is not sufficient enough for the nurses to continue to work sporadic hours and the nurses my daughter and her husband do get are not always qualified. This means constantly training and retraining people to oversee Lucca’s care properly. If they can’t get coverage, they have to care for him all day and sleep in his room to care for him at night as well.
My daughter is a teacher and her family depends on her health insurance which leaves Lucca’s father, who works for himself, to balance work while staying at home to oversee and train the nurses during the day. They have both had to take significant unpaid time off from work to care for Lucca and manage everything that his care requires. I love spending time with Lucca, but playtime with Nana also involves nursing care, suctioning him every half hour and monitoring him carefully throughout the day. I feel this overwhelming sadness for my daughter and son-in-law because their life is on hold; they are wary to make any major life decisions until Lucca’s health is more stable.
Lucca is the love of our lives. He eventually needs Laryngotracheal Reconstruction (LTR) surgery which cannot happen until he is no longer aspirating fluids into his lungs.
We pray that this surgery will enable him to live an active, normal, healthy life and that I will be the Nana who gets to take him to Red Sox games at Fenway. We need good, dependable, in home nursing care to keep Lucca safe and healthy to help make this happen.