A ‘discharge planning meeting’, commonly abbreviated to a DPM, is a gathering of as many professionals involved in a patients care to discuss a safe transition from hospital to home.
Today we had Jaxons second DPM. We were back in hospital just two days after the last one, until now.
•Lead Paediatric Neurodisability Consultant based on the communit
•Renal (Kidney) Consultant
•Ward Nurse + Student
His lead consultant gave everyone a brief overview of Jaxons history before asking me to explain how he was currently doing and highlight any concerns. The lead the went around the table clockwise for each professional to speak on where we were at with them, any concerns for going home and how their care would continue once we were home.
Me: I am happy with how Jaxon is in himself, he’s making huge progress developmentally and is vomiting less. I am eager to go home but I am wary of being home alone with him providing nursing care 247 365. I am aware of my feelings involved in Jaxons care and think there should be some sort of support available to help with Jaxon.
Renal: Jaxon requires bloods weekly once home and possibly twice weekly if results are abnormal. Can this be done in the community? Interestingly, it was established that yes nurses can take his blood in the community. Why is this interesting? Because at the last DPM when I asked for this (to save us so many hospital trips) I was told it was not possible.
Cardiology: There is concern Jaxons heart is getting progressively worse at each scan. He is on 27mg of Propanolol 3x a day and his heart rate is sitting between 100-110 which they are happy with. The Leicester cardiologist had previously wanted to try another medication whilst he was at Glenfield which Great Ormond Street Hospital (GOSH) has mentioned. However, following his bradycardic episodes in theatre they thought it was safer to wait as there is a risk of arrhythmias with this drug. GOSH were meant to see him last week but he was not well enough post op and so that appointment has been pushed back but they can decide on the next steps when they see him again.
Ward Nurse: Jaxons doing really well; interacting, playing, laughing, getting stronger. Mum is more than competent but help at home should be offered due to the demands of Jaxons care.
Palliative Nurse: Is providing emotional support to mum. Would like the ward nurse to put a referral in to Rainbows Hospice for Jaxon. Would also like to start making end of life plans in case that is the road Jaxons diagnosis goes down; things such as holidays and things I want to do with Jaxon.
Community Nurse: Will visit in the community and is in contact with the community palliative nurse. She will book in a time with me to fill out a continuing care plan (blog on this soon).
Dietician: provided an overview of Jaxons complex feeding journey and slight progress in minimising vomiting on current feed plan with 5 one hour breaks in a 24 hour cycle of continuous feeding at 38mls/hour. Looking to add duracel for extra calories slowly.
Occupational therapist: Jaxon has new equipment in hospital and has had a seating assessment for home which will be having a chair and bath seat delivered on discharge and also a supportive pushchair at the mobility centre.
At the end, his palliative nurse said I had mentioned my mental health a few times and asked how I was feeling. I want it to be clear; I am doing well but I am very self-aware and therefore speaking on the matter to prevent any issues, but I require their understanding and acknowledgement. She reassured me it was normal for me to feel this way and told me I’m essentially grieving for the life I thought I was going to live with a healthy baby, and for the diagnosis’ he’d received etc. The problem is, I know this. I know my feelings are normal. My fear is people ignoring my situation and the strength it requires to keep going and the risk of burnout if they send me home to care for a sick child with a life threatening diagnosis, alone.
In the end, it was decided that home leave would be a good idea to start getting us on the right path. Give us a taste of home life, let me try and get some routine at home for a night or so, let us try and settle in and have a few tasters with the reassurance that we are going back to hospital so it’s not too much weight on me and the care is shared. I appreciate this plan as it keeps Jaxon under close observation whilst letting us sleep in our own beds. It lets me be his nurse mum at home for a night with the knowledge I’ll get some rest the next day when we return to hospital. It can sometimes feel embarrassing to be asking for help. I wish I didn’t have to. I wish someone would just look at me with him and say you’re doing great but this is too much for one person so we’ll send someone to your house one day a week to do Jaxons nursing so you can recharge for another week. But this is the NHS and we have a love hate relationship. Baby steps.
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