1st Year Reflections

I haven’t done a blog post since I started back to work! I definitely underestimated how hard it would be to work full time, be a mummy and find time to do anything else in between, especially on the little sleep that Charlie lets me get at nights! This post is a reflection on our HD journey so far and what we are currently dealing with.

It’s hard to believe that we have lived with Hirschsprungs for one year now! I won’t lie, HD is not an easy disease to live with. Every case of HD is different and everyone’s journey is different. We have learnt to accept that things with Charlie’s HD will change from day to day, some days are good, and others are just proper rubbish.

This year has by far been the quickest year of our lives. It has definitely been life changing as we cannot imagine a life before Charlie now and it has been full of so much love and happiness, but at times, it has also been the hardest year of our lives. When we first got the diagnosis of Hirschsprungs, our world came crashing down around us. I could not look into the future with a happy outlook, I couldn’t see past the washouts, the impending operation and the constant unknown of HD. I will openly admit I really struggled.

I felt like more of a nurse than a mummy to Charlie. We were thrown in at the deep end and had to quickly learn as much as we could about HD. We had to learn the signs and symptoms of when things were going wrong, learning Charlie’s “normal” tummy and bowel movements and researching as much as we could to learn how we could help with gas and bowel movements, if at all! We had to be organised over and above remembering to have enough nappies stocked up and clean clothes washed and dried, I had to remember to order enough catheters, saline, probiotics and lactulose to keep us going month to month. 

I feel like I’m in a better place mentally to deal with Charlie’s HD and to a degree we are comfortable with HD and how to manage it. For the first while, I kept wishing time to pass so that we could get the operation out of the way, then wishing him to be older so that hopefully his HD would stabilise as he developed more. In some ways, I regret those days wishing time to pass quickly desperate for the future to see if Charlie’s bowels would work. So recently I’ve been determined to just enjoy him in the here and now, trying to force myself to believe that the HD will improve in time. Charlie has a real wee personality now and I love spending time with him, watching him laugh, smile, attempt to talk, master crawling, gain the confidence to pull himself up onto everything imaginable and discover he can cruise along the sofa with a real determination to try and walk! He makes us both smile every single day and I love being his mummy.

Watching Charlie thrive, it is hard to believe that he has anything wrong with him. He’s been through a lot, from barium enema tests, suction biopsies, washouts, an operation, more washouts and suppositories, but he is so resilient and such a wee fighter. Recently we had Charlie’s one year review with his surgeon, and she was so pleased with his progress. At the time he was doing amazingly well with his HD, he was having nappies most days and able to pass wind like nobody’s business! Although we were over the moon that Charlie seemed to be doing well with HD, we always had the concerns and what ifs in the back of our minds.

Unfortunately for us and Charlie things took another twist in our HD journey. Charlie caught a cold, which then progressed to a chesty cough and then a viral infection. Seven weeks later, two trips to the DR and one trip to A&E and I think he is finally getting over this infection. In terms of his bowels, Charlie was still having dirty nappies regularly at the start when he wasn’t well, which surprised me as I fully expected any illness to throw off his bowel movements straight away. However, as the infection progressed, he was having fewer nappies on his own. We then started having periods of no nappies for the full 48hours and then only having a tiny dirty nappy, until they stopped completely and his tummy began to puff up. We began washouts and from there we were back to washouts and trying suppositories on a daily basis.

We’ve kept Charlie out of nursery this past week as they advised that hand, foot and mouth was going around. Given that his bowels have stopped for a viral infection and haven’t yet started again, I didn’t want to chance him catching anymore bugs at the same time. I know I can’t do this every time a bug goes around the nursery but for now it feels right given that he’s had such a tough time with the viral infection.

If we are honest, both Davy and I are heartbroken that things seemed to be going backwards again. Although, we try to stay positive it’s just the most complicated disease to understand. There is no rhyme or reason to it and it’s hard not to panic when his bowels stop. For me HD is an emotional roller coaster, I am definitely coping better with the uncertainty and anxiety I feel towards HD, but it is always on my mind.

As Charlie has started to get over this infection, he has started to pass wind again and is regaining his appetite but at the minute his bowels are still not working on their own. I have to find the positive in this situation and believe that if he is passing wind, he will start having dirty nappies on his own again soon too, it’s just a waiting game. In the meantime, we continue with washouts and suppositories and just getting on with life facing the unknown one day at a time for now!