It's just a waiting game..

A very Long one at that!


With Noah's condition the next step is Tests, Tests and guess what more tests. They want to be 110% certain it is Hirschsprungs. This involves vigorous testing. Intrusive tests to my teeny tiny little guy. What mother wants to see that.

The tests he will probably need:

* A blood test (standard and used for just about everything)
* An X-ray with dye.
*A MRI
* Urine Sample
* This sounds really weird but its called a Manomentry Test. Which is where they inflate a balloon in his rectum and the surrounding muscles should relax, if not-Hirschsprungs is diagnosed.
and a biopsy. This is what I'm not looking forward to.

This biopsy involves going into his tiny little bum and going up the rectal passage ( I didn't know what else to call it and be a mature mother that i should be, not that I am) and taking a sample of his nerve endings in his intestines.

If Hirschsprungs is diagnosed then surgery is the only answer. No tablets or other answers. It's Surgery or nothing. 


Taken from: http://www.mayoclinic.org/diseases-conditions/hirschsprungs-disease/basics/treatment/con-20027602

Hirschsprung's disease is treated with surgery to bypass the part of the colon that has no nerve (ganglia) cells. The lining of the diseased part of the colon is stripped away, and normal colon is pulled through the colon from the inside and attached to the anus. This is usually done using minimally invasive (laparoscopic) methods, operating through the anus.

As i said in my first post Living with a Baby who's ill (http://noahbearsmomma.blogspot.co.uk/2015/12/living-with-baby-whos-ill.html)

The surgery can go 1 of 2 ways:

1) Simple keyhole, remove bit of bowel done. Follow ups every so many weeks/months
2) More complex 'pull through surgery' which means pulling the bowel through the skin to the outside and he would have a colostomy bag which has to be changed frequently through the day and could live with it for the rest of his life.. or a small possibility of having a reversal when he would be older.

Any parent in this situation will always pray that their child only has to go through option number 1, but that's not always the case. I am actually scared to even think about option 2 let alone if it happens. I am constantly thinking, how would I deal with changing his bag? What if I do something wrong? What if i don't have what it takes? Will people judge me? 

With these swirling around in my head, I scare myself and over worry. He made never need it so I shouldn't worry for now. But its constantly all I am thinking about, from the moment I open my eyes to the moment I go to sleep. 
I am just about coping with the thought that he may have to have surgery, let alone anything else.. Does that make me a bad parent? Does that make me horrible?

Anyway the waiting game.. 


Noah was referred from our local hospital to Noah's Ark Children's Hospital in Cardiff (Ironic Right?!) on the 2nd of November 2015. We were told by the consultant who saw Noah in November that he would be referred to see a consultant under Outpatients department. So when i rang up just before Xmas i was told that said consultant was deciding whether to see Noah in clinic, then outpatients or to be seen straight in outpatients.


THAT'S ALL WE ARE WAITING FOR!!!


One guy to make a decision!


It is now 16th January 2016.. Nearly 11 Weeks we have been waiting and there's no sign of any appointment any time soon. I have rang them every week since around the 20th December. But the answer is always the same. 'A decision will be made and you will receive a letter in the post'.

But you know what that means? No decision - No waiting list! 

He isn't even on a waiting list yet. Not for an appointment, not for tests not for surgery. Not anything. So its going to take even longer. I just want my little man pain free, care free.

This consultant doesn't know the hell We go through as parents. 

*The constant high pitched screaming
*The worry
*The heartache that we can't help him
*The constant doctor appointments to get different mix of painkillers and laxatives to help him go. 

But to not avail. Nothing works. 

He's still in pain and he's still only get 1 (at a push) 2 small dirty nappies a week.


People joked when I was pregnant 'Beware the dirty nappies, It will be dirty nappies galore'

No it really isn't.

Noah gets maximum 2 a week. There black, golf ball sized and stink more than usual. (Because he doesn't go as often and it stays in his bowel, it builds up and the smell gets worse). 

He has had 1 (what we as parents like to call) Shitsplosion. That was only because the doctors in hospital were desperate and they gave him strong laxatives. He is now 7 Months old, and has had only 1 normal poo. 1 for god sake! I prepared for 1 a day let alone 1 in his little lifetime. 

Imagine yourself being constipated, The belly pain you get.. That's normal to him, he doesn't know any different. Bleeding Bum, Yup that's normal for him. I cant wait for the day where Constipation and bleeding become an abnormal and a thing of the past. 


Until then, we'll keep plodding on. 



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Twitter: @Cheeyrich
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