Christina Ireland is a nurse practitioner on the cardiac floor. She is also the nurse practitioner for the Pulmonary Vein Stenosis (PVS) program. PVS is a disease that just a handful of years ago had a 100% death rate. All children died from it; some passed away slowly over time and some very, very quickly. It is a silent, disguised disease that is only 'cured' by lung transplant. Our radiant and joyful infant son, died 2 1/2 years ago, on the day he was diagnosed. No genetic link was known as it is so rare and random; that is what we all knew until our infant daughter was diagnosed with it at 3 months of age as well. In the past few years, BCH has charged forward with an experimental and sometimes successful approach to stopping PVS. Christina is on the frontline in the war with PVS. She is one of the reasons why so many children are now surviving and beating PVS.
Christina follows these children's steps whether they are inpatient, local and outpatient, or thousands of miles away and being managed at their home hospitals. She remains available by cell phone and emails and will answer any question for the families and the care teams. I have seen her do it dozens of times myself and she does not even appear to be taxed or tired of it. She has done it numerous times for us already. And she knows when to direct us to our home hospital and when to facilitate communication between the BCH PVS team and the local practitioners.
I have seen Christina stay late into the night, calling upon insurance companies for pharmacological approval and pharmacies for the correct drugs and dosages. Like our daughter, these children take all different kinds of medications: chemotherapy, pulmonary, cardiology, reflux, and blood pressure medications.
When in the hospital, she painstakingly answers questions we ask. I can't imagine how often she repeats herself, but she always finds a new way of explaining things. PVS is a complex disease with many systems involved. She responds to everything and when it is appropriate, finds a cardiologist on the PVS team to give their own explanation. She also broaches the subject of lung transplant delicately and coordinates the information and meeting with the transplant nurse practitioner.
As you can correctly assume by the list of different medications to battle this disease, there is so much involved in fighting the disease. Coaching the parents on chemotherapy, vein stenosis recurrence, oxygen use at home, enteral feeding, etc. takes a lot of time, persistence, and excellent teaching. She does it continuously.
Christina also spends considerable time bedside with us. She comforts our daughter or helps entertain her when I need to have very focused conversations with the cardiologists or during rounds. She even gets hands on and takes our daughter for soothing walks in the stroller around the floor.
Christina gingerly balances the realism and toughness that comes with this disease with the hope that she has for our daughter. She is not blindly optimistic, rather an optimistic realist. And I, as a parent, need somebody who can be real and honest with me; she does just that. This disease provides no cushion and does not give anything up. To provide false hope would be a disservice, but it would be easier to do. She does not take the easy route.
There is a PVS parent Facebook group. Anybody who spends even a minute of time reading the posts will undoubtedly come across Christina's name multiple times. There is a reason for this. The parents who have come to know her, as we have here at Boston Children's, know she is critical for their child to survive or at least fight the best fight. These parents pass her name on to the other parents who are seeking answers and hope. Some of these parents have already been referred on to hospice. Testimony shows she talks with them and has even facilitated many of their coming to BCH.
She has referred us on to charity organizations and even an organization locally that makes cakes for children free for their birthday. She does not limit herself to the medical care of our daughter, as enormous as that must be; she works for our daughter and us as a family.
Christina has helped us save our daughter through several recurrences. She is crucial to her survival still and I know she will be until we beat this disease. Christina is a warrior on the frontlines of PVS and a constant watch guard. Christina does not just fight within the boundaries of inpatient cardiology, inside BCH, amongst the children on her caseload, or with children of BCH. She has taken the fight across the country and probably global. We are indebted to the entire PVS team for the additional 5 months our daughter has lived. And to Christina... we are beyond indebted. Our daughter and so many others are the testament and glory of this profoundly wondrous nurse: Christina Ireland.