In May of 2023, Paige (21) underwent open heart surgery. Following the procedure, a remarkable recovery was made after a period of 14 weeks. While providing a detailed account of the experience would prove challenging, we have compiled a step-by-step guide of Paige’s journey in the hope it will help other families. It is important to note that everyone copes with challenges differently, and the following suggestions reflect a personal approach.
Paige had been receiving regular check-ups since birth due to her heart condition. While previous surgeries had been ablations, it was known that this upcoming procedure would be a major one. Pertinent information and questions for future reference were recorded in my trusty notebook brought to appointments. The consultant was familiar with Paige’s case and arranged for an ACHD Specialist Nurse/Liaison Nurse to assist. The nurse’s role is to meet the needs of individuals with learning difficulties, their caregivers and to engage hospital staff to provide appropriate care. A skilled liaison nurse can be invaluable, while a poor one can hinder the process. Fortunately, our liaison nurse was exceptional. After the consultation, he sat with us to explain each stage of the procedure and answer any questions we had. He also showed us the ward and provided contact information.
A few days later, the liaison nurse reiterated the procedure and explained what to expect during Paige’s hospital stay. The process entailed undergoing a period of sleep, followed by the insertion of a breathing tube into the throat for a duration of one to two days in the Intensive Care Unit (ICU). Subsequently, Paige would be transferred to the Surgical Enhanced Care Unit (SECU), then to the ward, and eventually discharged to go home. The surgical procedure would involve the clavicle being cut to access the heart, followed by an operation to repair/replace the mitral valve, with the aid of a machine to facilitate breathing. The bones would then be wired back together, and the incision site sewn up.
The hospital stay would last between six to ten days, with the skin taking four to six weeks to heal, and the bone requiring twelve weeks to heal. The physiotherapist would visit Paige to assist with getting up and moving around after two days, with her catheter being removed after the same duration. Paige would be able to shower on the third day. We completed a mental capacity and hospital forms, which are standard procedures in most hospitals. During the Covid pandemic we had kept Paige’s hospital passport form updated as a precautionary measure. I highly recommend completing this form as they prompt you to consider the needs of your loved one and ensure that important information is not overlooked. The hospital also provided a child-friendly booklet that explained what to expect during open-heart surgery. This resource proved to be invaluable in answering Paige’s questions and tracking her progress during our stay at the hospital.
Before the surgery, Paige underwent a CT scan, a canular was used to administer a dye which made her feel warm as though she needed to use the toilet (she didn’t). She also received a blue dye, which she found amusing as it reminded her of being a Smurf. The machine took pictures of her heart. She watched YouTube videos to help prepare for the process.
During the week leading up to the surgery, we met with the surgeon and the anaesthetist. The liaison nurse arranged for a parent’s room to be available for us and a bed on the ward. Necessary forms were rechecked, and swabs were provided for testing. Information about purchasing a reduced rate car parking pass was also received. Button-up short pyjamas were packed, lots of them, making it easier with the stomach tubes, coughing up “gunk” and managing the catheter. Anti-bacterial shower gel and disposable cloths for washing were also used. The liaison nurse was asked for any necessary items beforehand to help Paige adjust. A dressing gown and a water bottle with an inbuilt straw were also packed.
Sign language was practiced with Paige so that she could communicate with us while she had a breathing tube. Signs for “yes,” “no,” “love you,” “stop,” “scared,” “sick,” “hurt,” “water,” and “tired” are recommended. While having the breathing tube removed it is crucial that the patient is conscious as the medical team needs to assess their ability to breathe independently before removing the apparatus. Although this can be a stressful time, it typically lasts for only an hour, and with proper preparation, you can navigate it successfully.
Paige’s hair was tied into a bun on the top of her head to prevent it from getting caught in tape from her neck. She wore surgical stockings and slipper socks with rubber soles. After the surgery, Paige lived off hospital ice cream for a few days. A towel wrapped up into a tube was used for stability when she coughed and as padding between her and the seatbelt on the way home. She was initially propped up using pillows at home, but it was found to be easier once an angle adjustable, bed backrest was purchased. Kelo-Cote, a scar treatment, was also used to alleviate itchiness during the healing process.
Recovery times vary, and each person copes differently. Throughout our visit, the liaison nurse provided us with unwavering support and ensured that the hospital staff were well-prepared, making our experience at Glenfield Hospital as comfortable and stress-free as possible. Paige was exceptional throughout the process, and her family are proud of how she handled everything. She now has more energy and a new lease on life.