A Parent's DI Story #NoNeedToDI

We experienced problems when my son was readmitted to an adult ward following complications after pituitary surgery. He had received exemplary nursing care post-operatively from the paediatric high care ward following his tumour removal, where they understood DI / SIADH and its management and worked closely with the endocrine team to stabilise him for discharge. Unfortunately when readmitted, on account of his age, he was allocated a bed on an adult ward where the level of nursing wasn't as specialised.
For the first few days there the nursing team were intent on taking his bloods several times a day to monitor his blood sugar levels. As you can imagine, having just come through 2 weeks of constantly difficult post-op cannulation, this was not just unnecessary but distressing. Thankfully, we only agreed that he was admitted to an adult ward if I could stay with him 24/7, so I was there to advocate for him and to remind the nursing staff that he had DI not DM. On occasion, some health care professionals were not receptive to my intervention, however politely I corrected them. The misunderstanding was only resolved when his endocrine consultant wrote across his notes and a specialist nurse printed an A4 sheet to pin above his bed that blood sugar monitoring was not required.

I'm grateful to say that this was really the only questionable part of his care. The endocrine consultants and registrars not only saw him daily during his admissions (sometimes several times a day) but also responded out of hours to any clinical queries, and the nursing he received was overwhelmingly competent and kind.

The main lesson I have learned from this regarding DI, is that we now always refer to it as ‘pituitary insipidus’ and that he is desmopressin dependent. I am sure that the assumption that he had diabetes mellitus came from being incorrectly clerked when he was admitted to ambulatory care.

He has recently started university, so we have put as many safeguards in place as possible and feel reassured that he is medically stable. I would absolutely support a DDAVP red card and endocrine emergency number. Current Covid restrictions mean that accompanying and visiting patients is limited, and the opportunity for family members to advocate for their loved ones when they are unwell in hospital can be missed.’