Since being discharged with diagnosis’ two weeks ago, I believe we’ve been neglected to say the least. It’s a disappointing but a recurring problem that discharge is always rushed and incompetent. Leaving the hospital at midnight on what I believed was “home leave” for the weekend to return for complete discharge Monday, turned into me questioning what we had to go back for? After sitting around from 9am, having been aware discharge was looming and days in advance asking doctors to start putting the TTO (medical lingo: To Take Out – medicines for discharge) together and trying to ensure a smooth exit despite that not being my job, we still weren’t discharged until 15 hours later in the middle of the night. Good job my friend could collect us, as I’d been planning to go home via public transport with a 14 week old sick baby.
This is how much stuff we had accumulated in hospital and were expected to go home on public transport (that was after a four-week stay, imagine the car full I had leaving after our first 6 week stay: Went to hospital with a 6 day old, left with a nearly 2 month old. Why...)
The weekend home was lovely, my best friend stayed over with her girls and it was super chilled, cosy and happy. These girls (all three of them!) bring me so much joy and happiness in the darkest of times (Leianne will you marry me? haha!).
When Monday approached I really didn’t want to go back to the hospital. Our home leave had sent me home with everything we needed for complete discharge. So I called and they said they needed bloods. Urgh is that it, a trip to the hospital an hour away (4 buses in total there and back) for a 4 hour wait for bloods. But they said they needed them so off we went. Bloods done and we were home again.
The two weeks were strange. I was so happy to be home, out of the hospital. But I was alone for the first time with my baby. with my poorly baby. With my CMV, 1p36 deletion, hypertrophic cardiomyopathy baby. After Leianne and the girls left to go back to their normal work and school routine, it was just me and Jaxon. I had told family and friends to just give us some time to get home and settle in. I was so eager to be able to go to bed during the days when Jaxon slept because this wasn’t possible in hospital with health professionals in and out and the noise of a busy ward. But the reality was lonely and unfamiliar. We went from Jaxons bloods checked at least twice a week and doctors reviewing him every day, to him just having me. We went from a busy bustling ward with friends, family and volunteers popping in every day, to the silence of our two bed flat. The flat was new so the internet wasn’t set up, we didn’t have TV.. it was quiet and boring. Jaxons never been 100% so he would throw up and cough and choke and it was just my judgement now. I was confident with his healthcare but it was a lot. Feeds were every three hours and took an hour, so two hours was all i had in between to medicate him, change his clothes and bedding 3-4 times a day due to his reflux, pass tubes after he pulled them out, wash and sterilise bottles, make up feeds, shower myself, bath him, keep on top of appointments, contact internet/gas/electric providers, pay the rent and bills, sort finances, take phone calls from his dietician and hospital doctors, cook, clean and all the wash loads his vomiting created as well as sleep. It was also the first time we’d been sent home with an NG feeding tube. And don’t forget the fact before discharge I was told he was at high risk of sudden infant death (SIDS) in his sleep hence the apnoea monitor I was given. Despite this, we didn’t have contact from any health professional in those two weeks. By the time the health visitor came 15 days after discharge, I had already cried down the phone to my mum that there was no support and whilst Jaxons healthcare needs were in the best hands, mine, it was draining me.
Then on the Friday, two weeks following discharge, we were back at the hospital for an appointment with the cardiologist. I told them he’d been throwing up the majority of his feeds and appeared snotty and chesty again, fearing a return of bronchitis. I also mentioned recurring severe choking episodes. My comments were essentially disregarded as they weren’t heart related. So whilst in the hospital I called the assessment unit and asked if we could come up for them to swap his long-term tube for a temporary one so I could see if it was the different tube irritating him causing his coughing fits (why am I the one searching for answers and thinking of possibilities). “I’ll ask the manager” (bear in mind it’s supposed to be a walk in for tube changes). Then I was told “it should be done in the community.. but as you’re here they can do it on this occasion“. Sorry, what? I mean, I know I can pass his tubes myself, but I’d rather not if I’m somewhere a skilled professional is. And hold on, since discharge two weeks the community nurses haven’t even allocated us to anyone. We hadn’t seen a single soul in the community. So I returned to this unit that keeps me waiting every time and when seen by the ward manager I again repeated my concerns about him choking and chesty, the response? “Ok so I’ll just put him tube down now, all done, lovely, bye.”
Where is the holistic care there? Have they become complacent? Are we boring them now with our repeat visits? Like I want to be here?! At least they’re being paid, this place is taking my soul for free.
I then called the lead consultant whose secretary was away and so a temp told me they’d pass on the request for the callback regarding choking, sickness and poor weight gain – not minor things. It’s now 2am the following Wednesday and I still haven’t had my call returned.
I’ll tell you what’s frustrating, I’m his nurse 247. I do everything, but I hold no power in the hospital as his mum if I want something they aren’t planning or thinking of themselves. At work as a nurse I do everything I can. From looking at my patient to listening to them I write my to do list and get sh*t done. With Jaxon, I have the to do list, but it’s not mine, I can’t get his sh*t done, no one listens to me as just his mum. Not anymore anyway. Once you’re discharged you’re not their responsibility apparently and ignorance is bliss. He needs and NPA to check for infection (this is frustrating as they suctioned his snotty nose to put the tube down but didn’t take and send a sample as they were only interested in getting the tube down and us out), he needs a urine sample to check his poor feeding isn’t infection related knowing his has severe kidney reflux making him prone to infection, he needs a speech and language (SALT) referral to have been done weeks ago about his swallowing, he needs a doctor to review his gastric reflux, we need to troubleshoot this vomiting and choking so he can get his weight right. That’s what I wanted to do/request on Friday. As a nurse – things get put in place. As his mum, dead ears, I hold no authority. I have to find a nurse who wants to take on these jobs, a nurse who cares enough to want answers as much as I do. So instead we’re approaching a week later and I have no choice but to go and sit in that damn infection pit of a waiting room putting Jaxon at higher risk to wait hours to be seen until someone decides he needs the things I knew he needed a week ago.