Monthly Archives: April 2014

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Look! It’s an infection, no – it’s an obstruction, no – it’s…..it’s….super tight anus!!

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So yesterday (23rd April) marked two weeks since Henry had his pull through surgery. And coincidently was our first overnight hospital stay since the surgery. The surgeon made a joke about Henry knowing it was Wednesday and thinking he had to come in. I smiled but was definitely not laughing on the inside.
Tuesday night I had him in the shower with me and thought his stomach looked a bit distended. My husband thought it was just the way I was holding him but I kept an eye on it and it seemed to slowly but surely get worse. He stopped feeding overnight and had a pretty huge spew in the morning (all over my husband for once which I have to say was a nice change!).
I tried calling the surgeon, as well as the public pediatric clinic at the hospital but could not get an answer so back to emergency we went.
I knew he probably just needed a wash out but was told after the surgery not to do it due to the possibility of damaging the surgical area and the risk of infection.
The surgeon came to see him and gave him a washout but wanted him to stay overnight to watch him and make sure it wasn’t enterocolitis.
Today the surgical reg came and showed me how to do dilations. I have to say that compared to the wash outs, surgery, terrible nappy rash and everything else, I hate this the most. The look on his little face will be forever etched in my mind. He just stares at me like ‘why are you hurting me mummy’. We both cried the whole way through. I know it’s for the best and someone from the BGK support group has given me some good advice – to remember I’m doing this FOR him and not TO him. But that’s easier said than done.
Hopefully though it will allow him to pass gas and stool a little easier and ease a bit of the longer term pain.

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Day 1 Post Op

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Henry is doing well. He’s been breastfeeding since 8.30 am and has tolerated it well with no vomiting.
He’s definitely a boob man.
He has done a few little poos but I’m sure his system will start to process all that breastmilk soon and I won’t know what’s hit me.
He’s off the morphine (had a really tough night last night shrieking in pain every 5 minutes) and is just having regular panadol.
The doctors are a bit concerned about how distended his remaining intestine was and where they have joined this. Imagine an adult’s sock being sewn to a baby’s sock opening to opening.
There is a high risk of infection so will be on IV antibiotics until Monday or Tuesday. It also means his bumhole is huge. Like the size of a 5 cent piece. They’ve said that the ‘hope’ is that this shrinks down. I really hope so too.
But overall doing really well.
His wonderful Nanna bought him a George pig doll. I’ve posted a pic up. Nanna also got the first post op smile today. I think there’s a pattern forming here….

I won’t post anything again for a little while now as I’m sure you’re sick of my rambling!

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The Other Sister

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One of the things I’ve been grateful for throughout this whole experience is that I am not a first time mum. Dealing with all the newborn stuff and sleep deprivation is hard enough the first time round without our experience with HD thrown into the mix. I take my hat off to anyone who has dealt with this – you are truly amazing.
However it has occurred to me recently that being grateful for that is a pretty selfish thought.

Yeah sure it’s been easier on me and my husband, but what about the person it’s been real hard on? The person who before Henry came along was who’s needs I put before all others? What about the person who’s had her mum missing for three out of the last 6 weeks? And who on her days at home with mum is forced to attend medical appointments. Forced to walk not run, talk quietly, not play with the curtains, don’t interrupt the doctor, don’t ask to go to the toilet as soon as we go into the dr’s office……basically forced to stop being a two year old.

So this post is an acknowledgement of Amelia. And all of the other siblings who have brothers and sisters with medical problems. It can’t be easy. Particularly for a two year old.

The first night Henry was admitted to the NICU we had been in hospital together for 10 days. It was so hard not being able to stay with him anymore. I was absolutely devastated.
I went home and my little girl was still awake so I told her to climb into bed with me.
Henry’s cot, with the teddy bear she had picked for him was staring at us from the corner of the room. All of a sudden she told me she was sad. When I asked her why she started to cry and said ‘I want Henry to be at home with us’. Before long we were both sobbing uncontrollably and I had to ask my husband to come in and comfort us because I didn’t want her to see me so upset.

In the midst of the separation from me, the upset to her routine, and all the attention that within a day had moved from her to Henry, the thing she was most concerned about was her brother. But I wouldn’t expect anything less from her.

She loves her big sister role. She runs and gets nappies, wipes, toys, puts his dummy back in, you name it. I have to draw the line when she wants to pick him up by herself.

Today my mother in law witnessed her giving one of her dolls a bowel washout, talking gently to it saying ‘I know it hurts, I know. Lie still, mummy’s here’. Nothing phases that kid. Sure she’s acted up a bit, and ran around the hospital at times but who wouldn’t.

She is one in million. She is the most caring, intelligent, spirited, rambunctious, hilarious, kind, loving little girl I have ever met. I know I’m biased, but that’s my job.

So yeah, while it’s been easier on me to not be a first time mum, it’s been bloody hard on her. And on reflection I now think I would prefer Henry to be my first, so I wouldn’t have to put my remarkable little girl second in such a huge way.

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Speaking of Dollars!

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I recently found a brilliant resource, it’s an Australian based support group for people who care for someone with HD and another similar condition. Imperforate Anus. It’s called Bowel Group for Kids. Duncan Armstrong the Olympic Swimmer is the patron. Duncan also suffers from HD which is very inspiring!
One of the members is doing the City to Surf to raise funds for the group. See her Facebook post below:

Danielle Wolford‎ – BGK

Hello everyone, it’s that time of the year of creating awareness out there As I did last year, I”m raising funds again for BGK. Here is my page in case you want to help spread the word. For those in Sydney you are more than welcome to join me and my family! We raised just over $1000 and this year my goal will be $1,500!
https://city2surf2014.everydayhero.com/au/team-bgk

I have considered joining Danielle and her family however unless the organisers have hired someone wielding a chainsaw you probably won’t get me running that far!
Jokes – given the worthy cause I may just give it a whirl this year. Great work Danielle!

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Great news!

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Henry’s pull through surgery went well. Looks like he has short segment HD so he has still kept most of his large intestine. They were able to do it all by laparoscopy so he just has 3 little scars on his belly. He is out of recovery and back in the ward and although he is in a bit of pain and will be tying to eat the cot later this evening as he can’t feed for 24 hours, he’s doing really well. We won’t know more about any longer term issues until later but hopefully he will continue to get better quickly and we can get him home and back to his crazy sister. However I think he might be enjoying the peace and quiet.