Boston Hemophilia Center

Contact the Boston Hemophilia Center 617-355-6101
International +1-617-355-5209
Contact the Boston Hemophilia Center 617-355-6101
International +1-617-355-5209

Health Maintenance

by Maura Padula, RN, CPHON

It's hard to believe a year has passed since the day I hastily gathered up a few essentials to bring home from my desk at Boston Children’s Hospital and set up shop to start working remotely from my dining-room table. I did not want to get too comfortable. I told myself this would only be a temporary situation, maybe a week…or two at most.

At that time, much of the work of health care organizations across the country — and across the world — experienced an abrupt pause as we responded to the rapidly-expanding pandemic. While non-urgent care and elective procedures were initially suspended, there was a relatively prompt recognition that routine care had to continue, albeit in a modified fashion.

Here on the pediatric side of the Boston Hemophilia Center, we quickly learned how to do much of our work virtually. The team meets together with patients and families via a telemed platform to complete annual bleeding disorder comprehensive visits, an essential aspect of care. During this visit, the medical, social work, nursing, and physical therapy teams review and update care plans, discuss any changes and challenges brought on by the pandemic, review key bleeding disorder education, and complete a modified physical-therapy assessment.

There have certainly been some benefits to this new routine, and we have received positive feedback about the ease and efficiency of the virtual platform. We have so appreciated how you have allowed us into your homes and shared with us how COVID-19 has affected you and your family on a very deep and personal level.

With the approval of the COVID-19 vaccine for adults earlier this winter, we have started to see the light at the end of this long tunnel. However, for now we will continue to meet virtually for comprehensive visits, until it is safe to meet together in person as a group again. You can expect to hear from our administrative staff to schedule your next comprehensive hemophilia visit when it is due.

  zoom-meeting-with-the-bhc
 ZOOM VISITS: Teenager, Nizar Bouyacoub, is having a telehealth appointment with his BHC multidisciplinary team.

 

While virtual visits will continue for now, it is important to recognize that some care can only be done in person — even during the pandemic. We strongly encourage you to continue to receive timely recommended health maintenance through your/your child’s primary care office.

Similarly, some care related to your bleeding disorder diagnosis must also be done in person. Examples include: immunizations, administration of initial doses of new therapies, routine and urgent imaging, lab monitoring, physical therapy, and emergency room visits. We recognize that for many, the thought of entering a health care facility during the pandemic can be daunting.

We would like to provide some reassurance in this regard and let you know about some of the many safeguards that have been put in place at Boston Children’s to keep you and your family safe during in-person visits:

  • Pre-visit phone screening: You’ll receive a screening call prior to your visit to review any potentially concerning symptoms, and any current or recent COVID-19 positivity in your household. For positive screens, a decision may be made to delay care or to change the appointment to virtual if clinically appropriate. If inperson care is timely/urgent, it will proceed as scheduled, and appropriate precautions will be in place for your visit.
  • Masking: When visiting the hospital, we ask that you wear a mask. Upon arrival, you and your child (if developmentally appropriate) will be asked to change into a hospital-issued, medical-grade mask.
  • Social distancing: You will see there are far fewer people on campus than usual, given the large proportion of staff working from home and the large number of patient-care encounters occurring virtually. When you come for in-person care, we ask that only one caregiver accompany your child, and we request that siblings remain at home. This also helps to reduce the number of people present in the hospital at any given time.
  • Physical spaces in waiting and common areas have been modified to promote social distancing. We ask that you do not arrive more than 15 minutes prior to your scheduled appointment; this reduces the number of people congregating in waiting areas.
  • Lab appointments are now required for all lab draws. This too limits the number of people in the waiting room at any given time.

A year into the pandemic, I can still be found working from my dining room many days of the week — albeit now with an actual desk and a more reliable internet connection. I am hopeful one day in the not too distant future, my dining room will once again be a place where family and friends can share food, closeness, and special times. I am hopeful your homes will be too.

Until that day, we as a center will continue to be diligent, to deliver timely and safe care to you and your family. Rest assured, our team is always here for you, and we hope you will continue to partner with us to promote your health during this challenging time. Until we meet again — whether in person or virtually — stay safe and stay well. On the adult side of Boston Hemophilia Center, a similar model and safeguards have been put in place. For annual comprehensive visits for adults, providers at Brigham and Women’s Hospital are also holding virtual telehealth visits. If you have a follow-up or emergency visit, your physician or nurse practitioner will determine the best way for you to be seen.

If you have any questions about medical appointments for adults with bleeding disorders, please call 617-278-0707 or for children with bleeding disorders call 617-355-6101.


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