Urology Appointment

Another day at GOSH!

This morning I had to get up earlier than normal to make sure I got to Gosh for Max’s 9am appointment. We have a radiology, urology and nurses appointment today so all fun and games with lots of poking and prodding. He’s also not feeling very well bless him. Henry got diagnosed with Scarlett fever this week so is on antibiotics. But I’m watching Max closely incase he gets it too. He’s currently got a nasty cough and a cold which meant he woke me up 4 times last night and didn’t want to go back down either. Given that we had gotten all three down by 7.30 and eaten dinner by 8pm last night we were feeling very proud of ourselves so I think he was just making up for it. Just what you want when on the 7.30am train into London and having to stand so you are with him.

When I got to Gosh I was 30 mins early so time to go and grab some breakfast at the lagoon before my appointment. I went and sat in the radiology waiting room and my heart broke in two. A poor little girl not even 1 was sat in the waiting room cuddling daddy with her mummy and sister next to her. The dr came out to get her for the xray and I have never seen a baby switch to absolutely petrified so quickly in my life. She screamed and screamed like she was so scared of what they were going to do. The poor mum just had to sit there and let the dad take her in, still hearing her scream in the waiting room for 30 mins. I mouthed are you ok and she just started crying, just wished I could cuddle her and make her better but she said she was fine, scooped up her daughter and held her tight. The feeling of knowing you have to do something your child is going to hate or put them through something that petrifies them that much, knowing it’s for their own good is such a hard/heartbreaking thing to do. I was so close to crying for her too.

When I got to the appointment they asked what I knew about the test – virtually nothing – and if he had been taking antibiotics. When I said no, she seemed concerned and said she will have to find out whether they can do it or if we will have to reschedule. I was not amused, no one has been in contact and I had come all this way in rush hour. They better do it!

They did the scan, she said his urine was small and he hadn’t emptied his bladder so they were a little concerned. She also thought there was a small amount of reflux. Again I’m not sure what this means really but can’t be a good thing? Just makes you panic when they give you little bits of info. I know it’ll be fine either way even if we have to catheter. It’s just another thing that’s not fair and I wish he didn’t have to go through alongside the anxiety of the unknown killing me.

Feeling really emotional and like I could cry at any given second. Went up to my next appointment in urodynamics and had to wait 50mins before being seen which only added to my “I want to cry mood”. But it was improved by an amazing little boy with a lovely mum talking to me. The boy came in and started laughing this hearty, loud, amazing laugh that just made me smile and feel better. These kids 😍… I’m sure it’s us as parents that get more upset about what they are going through than they do!

They have put an alarm in his nappy to tell me when he pees, so now it is just a sit and wait for it to go off so they can measure his wee. He has just done a wee though and she said his bladder was empty so might be sat here for a while. I spoke to the nurse about it all and she said she’s going to put him on antibiotics for the catheter but also some for his chest just to make sure the cough doesn’t get to it.

Speaking to my fetal surgery girls and I just said to them no kid should have to ever come to hospital. Most parents say they wouldn’t wish their baby to be any different as the Spina Bifida makes them who they are and strong. I know my kid would be strong without it. I fucking hate Spina Bifida. It definitely doesn’t make him who he is, he is strong and amazing without it. I love him regardless but wish I could take it away for him. No child deserves to go through this sort of shit. Not just Spina Bifida, but anything that brings them into hospital. Poor kids. Life is cruel and unfair…who ever decided there should be these types of illnesses for children to suffer is one mean mean buggar!

The alarm went off and he had emptied his bladder which is a good sign. Alarm back in and wait to see if he does it again. She’s seen him empty his bladder twice and seemed happy with that but doing the last test just to make sure.

When the dr came in to see us she explained that there’s no sign of damage to the kidneys but, as expected with SB babies, there is reflux to the kidneys. His bladder is also overworking to empty itself which has led to damage to the bladder and its misshaped now. They have given us the prescription for antibiotics that he has to take daily for the foreseeable future to prevent against utis. Tbh I’m a bit gutted, although nothing massively negative going on here we will have a daily reminder now that he does have spina bifida. Before I could have days where I forgot, they were the good days.

After a very long wait for the prescription and a walk back to the train station as there weren’t any cabs free on the walk we made it home. I was shattered and just wanted to cry. Curled up on the sofa in front of the fire and had a good sleep, before the twin carnage began!