Surgery

My daughter has a duplex kidney with grade 4 reflux, so after all her tests and scans, we were put on a waiting list for surgery to correct it. In May, we were told it would be probably a year, although my friend’s little boy has been waiting for 2 years so I wasn’t holding my breath. But yesterday, we were given a date and it’s in two weeks. I’m freaking out. I asked the person in bookings if someone from the consulting team can speak to me before then because I still have a lot of questions. For a start, no one has even told me the name of the procedure. They want to do something to build up the area around her ureter to prevent reflux from the bladder. That’s all I can remember. When the consultant initially called me, I’d set aside the time and arranged childcare so I could focus on the call but he hadn’t realised her DMSA had already been done so we had a general chat about her condition and said it sounded like surgery wouldn’t be necessary for her. He ended up calling me back randomly the next day right at nap time, my daughter wanted my full attention and I was solo parenting, so distracted on the call, and the first thing he said was he’d looked at her DMSA and was recommending surgery. I didn’t really ask any questions or absorb the info cause my daughter was sobbing and freaking out. I thought I’d get a letter confirming things so I could at least google it but I didn’t. Our paediatrician recommended I ask for another call with the consultant, which I did but that was months ago and no one has called me. I didn’t really worry about it cause I know the wait times are long. But now here we are, with an appointment date, it’s right around the corner, and I have no idea what to expect or if I even want this to go ahead. I remember the consultant saying it would be at least one night in hospital but could be up to a week. I’m going to call next week and ask again to speak to someone if I don’t hear anything in that time. Has anyone been through something similar and have any insights into what procedure they might be doing?

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Could you call his secretary? You are local to us we are dealing with the reflux over at the JR, have our appointment tomorrow to find out next steps but his secretary has been fantastic!

We’ll also be at JR! I called after our paediatrician appt in July, but it was a general number and no one ever phoned me back. I also emailed the address on the letter. I don’t have the consultant’s name or his secretary. I keep meaning to follow up but life gets in the way!

Sounds like it’s a deflux procedure… My sons had it (along with a circumcision). It’s a fairly straight forward procedure, they insert a type of Botox in the ureter to close the gap essentially. X

A week stay sounds pretty long for a deflux procedure though… we were home the same day xx

@Rhiannon we have had ours today and we will be having Deflux surgery in around 2 weeks, they wanted to do it when my little one was 6 months old but has suggested he has it now as he gets very poorly with infections, he will be circumcised at the same time, is your consultant someone called Dr Ashraf? If so I can give you all his details and contact number x

@Becky I hope it helps your little boy! It’s good they can get you in so soon if he’s been really poorly with it. I’m going to dig out the letter to see if they did write the consultant’s name on it, but Dr Ashraf doesn’t sound at all familiar so I don’t think that is our consultant… but thank you for offering and following up, that’s so kind of you ♥️

@Aps ah must be something different then cause our appt letter confirms that it will be at least one night, but potentially longer. Definitely not same day release!

@Rhiannon I am really hopeful, his first infection landed him in PICU there for 4 weeks when he was 3 weeks old on life support, crazy what some wee can do to you, 01865 225530 that’s the number I originally rang and pressed option 1, the lady was super helpful x

@Rhiannon we will also be staying in for 1 night potentially longer, he said when children are older it’s same day but not for under 4

@Becky that’s so awful!! We also had a stint in hospital with her first infection, seeing your little baby connected up to all those wires and monitors is such an awful feeling 💔 If your date is in 2 weeks, our dates might overlap at the hospital?? I will keep my eye out for you ♥️

@Rhiannon yes they might well do!! When you stay over you’ll be on Toms ward, they’re fantastic, my 3 year old came to visit when we were there last time fantastic indoor and outdoor play area, if you want to stay as a family too ask them about a room at Ronald McDonald one parent can stay on the ward and a sibling/other parent can stay in Ronald!

@Rhiannon did you end up having it done? We had ours today!

@Becky I keep meaning to message you today! I called the number you gave me three times, kept being told someone would call me back, finally the receptionist asked me to email my questions and she’d see if she could get me written answers. I got a call yesterday morning, my daughter’s original consultant has retired, her new consultant looked at her file and thinks she didn’t need the surgery as she’s been UTI free for over a year! We have another appointment in a couple months to assess her condition, see if her reflux is improving on its own, and discuss next steps. I’m pretty relieved 😅 Thank you for your kindness and help with the number! I hope your little boy heals up nicely and it helps him stay well ♥️♥️

@Rhiannon oh that’s fantastic!!! Fingers crossed she doesn’t need it doing, it was a stressful day we are home he is very sore down below but fingers crossed this means some road to normality! X