Help! Hospital Discharge Planning Meeting Next Week!

jaattrill

We live in North Yorkshire andw We have our hospital planning/discharge meeting next week for our baby daughter and would appreciate any advice as to what questions we need to be asking and who to ask so that we can make the transition from hospital to home as smooth as possible for our baby daughter. Thanks

Our daughter is nearly 11 weeks old and has spent all her short life so far in hospital. She collapsed about 40 mins after birth and suffered a hypoxia leaving her with profound diplegic spastic cp. 9 weeks in Scbu (including intensive care...twice), a week at our regional hospital having surgery for a jejunostomy and now back at the childrens ward at our local district hospital. At long last there is a chance we could have her home soon with an Applix feeding pump, portable suction and a whole array of medication.

We have been asked by our community nurse to think about what questions we will have for the planning/discharge meeting and what we will need when we get home???? Some of this we wont know until we are home!!! Any advice about what we need to think about from parents who have been through this transition would be helpful.

The meeting should involve 2 consultants, community nurses, our physio, our health visitor, a spcialist jejunostomy nurse, and possibly our social worker (who we haven't met yet), our SaLT, a dietician, our early years key worker and possibly our GP and a representative from our local hospice. In addition we also have appointments with an opthamologist, an audiologist.

Any advice as to how we organise practical support and respite care?

Many thanks

J and R

aimeylady

Hello,

I dont know if you are still a member ont his site, but I did a search adn your post came up. My name is Aimey Shears and on the 18th of January I gave birth to my darling daughter Evelyn. We had a very traumatic exerience and Evelyn had the cord round her neck twice and was left in my birth canal with her head out to just above her ears for over 30 mins suffocating. The midwives wrote in my note an episiotomy was too technically difficult and did not check her oxygen levels by scratching her head to take a sample, nor did they use vontouse or any other method to help her out as they say now in retrospect there were no signs of distress. Her heart rate dropped to 98 but there was no mechonium etc ( we hope to seek legal advice).



Evelyn was cooled for three days and was monitored closely in Kingston Hosital Surrey where I gave birth to her. An MRI has shown she has Severe Hyoxic damage with the following areas being affected: There is symmetrical and extensive signal abnormality in the basal ganglia and thalami bilaterally, the intervening internal capsules and also in the peri rolandic and para central cortex and white matter.



James and I were then told on Tuesday 7th of Feb that our darling girl also has Retinoblastoma in both eyes and we were rushed to the London Hosital, how one child can suffer so much destroys me.She is being treated for the cancer with Chemotherapy at Great Ormond Street. Brain damage and eye cancer!. We were then in the london for 2 days and then transferred to St Georges hosital in Tooting for Neurometabolic tests on Evelyn, including EEG, Lumbar puncture and blood tests. The Lumbar puncture was unsuccessful so had to be repeated 3 times.

We have since then been in another hospital where Evelyn is suffering terribly with chronic reflux and cerebral irritation and is very very traumatised by the whole ordeal, she is either asleep or awake and screaming in pain, there is no calm for her and as a mother it is terrible to watch, Like you I have not brought her home in two months and have been sleeping (if you can call it that) at the hospital. W ehave a plannig meeting next Wednesday adn like you I am looking for advice, I see your post is very old and I wonder how you have got on ove rthe past months.

Our heads and hearts are a mess and we feel very lost in a sea of doctors and treatments and very hard decisions!


Aimey x