A Rohan update: Part One

So it's been a long while, and I guess a lot has happened. I feel like I really want to keep up with the blog but it's just been one thing too many recently and I've found that writing out short updates or thoughts on Instagram have kept my feelings level, but there gets a point when I just need to write it all out.

These past few months have been tough, I was, as always hoping that this new year would be kinder to us, but alas I don't ever think wishful thinking is going to be the answer. In a way I've come to realise I need to just stop torturing myself when thinking that things will be easier, or if our lives were different and comparing my situation to others. I just need to accept the now and that this is the life we are living and I don't really have much control over the bigger things that happen, I just need to make the small changes to make the everyday a little easier. Without sounding like a teenager there is something interesting to remember about trying to live the life you've been given (yolo and all that) because really what else can we do? I'm not going to magically change Rohan's condition, things won't ever just change overnight to how we think they should be and I'm sad to admit that I think things will always be on the harder side for us. Maybe they won't be hard all the time, but for some reason this life has chosen us so I might as well try and make the most of it.

Anyway, that out of the way I guess I should try and record a little of what has been happening over the past few weeks, to try and start processing it all. I don't really feel like I have even began to, sometimes you feel like you're coping and it's all just carrying on like normal, but then something stops you in your tracks and you realise that actually the carrying on part is just a way of staving off really letting yourself feel the weight of what's been happening. But how do you begin that process? I wrote a little about how on Friday I got a sudden urge to have a big cry, to let the events of the last few weeks off my chest a little, where the tension has been held tight for fear I guess of letting it go and it all coming apart. The cry still hasn't happened, the tension is still there but with talking and sharing my feelings it's beginning to ease a little.

So, to carry on with the story and update, Rohan has spent about two and a half weeks in hospital over the last month or so. Just after his birthday in the middle of January I took him to the doctors as he was still not getting over a cold and coughing quite a lot. His weight was dropping due to the coughing and subsequent vomiting that comes with it. He was prescribed some antibiotics and we hoped he get better. He then perhaps caught another cold on top of that, and when we had a our Respiratory review a week or so later he was still suffering. When he was weighed we were so heartbroken to see that he had dropped quite a significant amount of weight and looked visibly skinny. We were given some different antibiotics and what was thought was just blocked upper airways from all the snot. We did mention to our consultant that we were a little worried as it seemed as though his oxygen saturations were dropping lower than usual overnight, but not much more was said on it and we were hoping the antibiotics would help shift things.

A few days later we travelled down to Devon to stay with Rob's grandparents for a little break, but by Saturday it became pretty clear that he wasn't very well. We tried our hardest to carry on like normal, but once we'd put him to bed, he just kept on dropping and staying low with his sats. He looked like he was working pretty hard to breathe too, so I decided enough was enough and he needed to go to A&E. It's scary admitting that you can't give the help your child needs, that you are not enough and knowing that he needs medical help. I was scared about going back to hospital, and I think the trauma and anxiety from when Rohan was first born and our long hospital stay was returning. But I knew we had done the right thing.

We were seen straight away and taken to resus where he had an oxygen mask and seemed to settle a little. He had a high temperature and was still working hard to breathe though. It's difficult going to a new hospital where they don't know him and having to explain his condition to various people. But the team were great and we were eventually moved to the children's ward to stay overnight for observation. By the time we got there it was getting into the early hours of the morning and we were all exhausted. Rohan just wanted to sleep and so did we. We decided that as only one of us could stay that I should drive back to Teignmouth and sleep whilst Rob stayed. The plan was to put him on a machine to help with his breathing, they also tried to put in an IV cannula but couldn't get access at all, so he had to have an IO needle which went into his bone marrow in his leg via a needle being screwed in. I'm so glad I wasn't there to see this happening and I'm not sure I could've handled it. I think it quickly became clear that he needed something else to help him breathe and he was moved to the HDU unit to have CPAP. When I first heard this it filled me with fear, because this is the machine that he was very first put on the night after he was born and remained on for a good week or so in intensive care. It made me worry that it was all happening all over again.

The next morning I returned and was so happy to see that he looked so much more settled. He'd had sleep, fluids and antibiotics and it all seemed to be helping. I think that first day he slept almost constantly. The ward was very quiet and we had lovely nurses and doctors to ourselves, as well as a room so we could both stay. Rohan did really well and recovered quickly and by the next day was off the cpap and didn't require any oxygen. He eagerly wanted milk and was showing signs of his normal happy self once more. It was such a relief. I think he stayed one more night for observation and then he was discharged. It helped ease my anxiety a lot that he could just have such a short stay and quick recovery and then be deemed well enough to go home. We thought we were over the worst of it and that hopefully now we would just take it easy at home.

I had no idea that once we got home we'd be back a week later. I can't believe that we managed a whole year without going in again after Rohan was born, so it all felt surreal but familiar to be there again. Once again we felt split between our two children and of course the anxiety and trauma surrounding Rohan's birth and hospital stay were there just below the surface. But you just have to carry on, you have to make arrangements for childcare and know that you'll miss bedtimes and it breaks your heart to not be all together, but you just do it anyway because what other choice do you have? I feel worried that this may be our future now, trying to avoid hospital stays during the winter and having to go through this all over again. I feel bad for Theo that he has to endure this, that he has no choice and however well he seems to understand it and handle it, I know it's having an effect and coming out in other ways. He still needs us, he misses his brother and I'm sad that this may be a reoccurring thing over the next few years. I'll try not to think about it, but it's always there at the back of my mind.

Part two of the update coming shortly...