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Groundhog Day – HD Style

Well the title says it all.  Sometimes I feel like every day Henry is facing the same challenges – but I guess in a way that is a good thing because if it’s the same it means it’s not worse. Another bout of enterocolitis with a bit of bronchialitis as an added extra last week prove that it can be!

After Henry’s pull through surgery he pooped by himself for about a week and a half.  Then it pretty much stopped again. Sure, he has the occasional poo and we all celebrate like he’s just become the youngest person to walk on the moon, but those times are rare. At the moment I feel like he is absolutely no better than he was before the surgery with one difference – at least we know what to do to stop him from getting really sick.  Hence the groundhog day title. Henry’s day goes something like this:

7am – Wakes up – occasionally vomits his whole feed if he is a bit blocked up (at least once a week). We wash the sheets. On the upside at least then I’m forced to wash them regularly!

9am – Sleep

11am – Wakes up – dilations done with the occasional little shart (it’s in the urban dictionary if you are unsure of the meaning of shart). Feeds. Plays. I try to pry his sister off his face/arm/leg/stomach or wherever she has attached herself to.

1pm – Sleep

3pm – Wakes up. More dilations. Plays. More prying of the sister.

6pm – Stomach distended. Crying with gas pains. Try to feed – won’t feed. Bowel washout or catheter tube put in to release gas and a shitload (pun intended) of very loose watery stool. Will now feed. Cuddle, song, bed at 7.

The last few days just to mix it up a bit he’s been getting really distended by lunch time so the washout or tube has been done twice daily.

People keep asking me how he is going – how do I even explain all this to them? And do they even REALLY want to know? I’m not so sure.  So I always just smile and say ‘he’s doing ok’. The next question is often ‘And how are YOU going?’.  Another one I don’t know if they really want the truthful answer to.  How am I going? Well where do I start?

I’m ANGRY – angry that my son has this awful condition that seems like it will affect him forever.  And I feel like at the moment there is no end in sight.

I’m FRUSTRATED – with doctors.  I have nothing but respect for them all and we have been so well looked after but I can’t help feeling frustrated as I really feel that they are just guessing with a lot of the information I am getting.  Deep down I know there is no definitive answer, and no miracle treatment that is going to fix him. But I feel like when they use words like ‘he might have enterocolitis, you might need to increase the dilator size, he might need a laxative’…that they aren’t really instilling a great deal of confidence. I feel like screaming – THIS IS MY SON – MIGHT ISN’T GOOD ENOUGH HERE, TAKE YOUR MIGHT AND…..(insert expletives which I often think but would never say out loud – particularly to a doctor that I know is doing their very best and really does care about MY son).

I’m SAD – I was watching some crap chick flick last night and was bawling my eyes out at a scene which depicted some mothers in those precious moments after a baby is born…and I couldn’t help but think back to those moments with Henry when I was told ‘you have a healthy baby boy’.  And that wonderful feeling of relief and gratitude at HAVING a healthy baby – only to have that relief replaced with worry, and that gratitude replaced with grief a few days later.

But along with all of these things I also feel THANKFUL that I was able to have Henry in the first place, and LUCKY that I have such a calm, good-natured little boy, who also has a very loving big sister.

This post isn’t about making anyone feel sorry for me.  I know all these feelings are par for the course as a mother.  It’s hard not to feel SO MUCH when these little humans are your whole world. But as I said at the beginning of this blog, my intention is to not only share information about Henry’s condition, but it’s also to help other parents.  And I want these parents to know that it’s ok if they do feel these things, and to find some sort of outlet for yourself to debrief. HD isn’t going away anytime soon, so the only logical thing to do is cry, scream, swear, and then get on with trying to kick its arse.

Whenever I face any sort of challenge the end result is that I will fight back. Not in a physical sense, but in a sort of problem solving kind of way.  So in two weeks we have an appointment with another surgeon in Sydney to get another opinion. Not because we aren’t satisfied with Henry’s current level of care – the opinion may very well be exactly the same with all the ‘mights’ thrown in for good measure – but because I refuse to ever give up in my quest to try and make my kid’s lives better.  I’m a very stubborn person and sometimes that works in my favour.

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

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.