A Rohan update: Part two

Once we did get home he did really well for a good few days and seemed much like his normal bright self. I'd forgotten how much he giggled and smiled when he's feeling well and it made me realise that he'd been pretty poorly leading up to this point. But by the following week he seemed to be struggling once again. We had our cardiac clinic on the Tuesday and after they had finished all of his checks, ecg and echo we mentioned to his cardiac consultant that we were worried once again. She suggested that we get him chest X-rayed, then take him round to A&E to be looked at. We did all this, and whilst his X-ray looked clear and ok, they wanted to keep him in for observation. So we waited to be moved to the small ward off of A&E, and I stayed the night. It was a horrible unsettled night and Rohan slept so badly, as did I.

Regarding the cardiac check up, everything still looked the same as it did, and his breathing problems aren't really attributed to his heart. They discussed that they do want to surgery on his PDA, which is the duct that all babies are born with, but which closes shortly after birth. Rohan's is still there and open and quite large so they want to close that. They think that it will only have to be keyhole surgery which for us is a relief. Then I guess they'll just closely monitor his aorta after that. His consultant mentioned that his duct still being open probably isn't helping his breathing trouble as it's making his lungs a bit wetter than normal with too much blood being directed there. So hopefully the surgery will help too.

When were told after our initial night in that Rohan was going to be admitted we asked what their plan was and mentioned that he responded really well to CPAP before and this is what we thought he needed. They we hesitant to do this as that would mean him being admitted to PICU, which they didn't think was needed. Again it was blocked airways due to his cold, and he was kept on oxygen like at home. He did ok but just kept on having really unsettled nights. We were in a bay with up to three other children, and it's not quiet to say the least. I felt so conscious and guilty every time Rohan woke up crying, which he did often as he was finding it hard to breathe. He was so uncomfortable and because his sats dipped every time he went into a deep sleep we found ourselves changing his position, or stirring him out of it, so I don't think he ever had a full, good nights sleep. We stayed in that bay for a week, and were almost discharged on the Monday as his oxygen requirement overnight was getting less and they seemed happy with him. But then something happened, I'm not sure how but a combination of things like him having a stomach upset and resulting vey sore bottom and so many nights of broken sleep that that night he had the worst night. He was waking every half an hour, I didn't get into bed until 3am. After that night I realised that he needed something more than just oxygen as he was really struggling. Rob came into hospital to swap over with me so I could go home and sleep, but I made sure that he was going to start pushing for them to do something more for him.

I hate that we had got to this point, where we had to get cross and really push for what we wanted. I appreciate everything the NHS has done for us and don't ever want to seem ungrateful, but sometimes as a parent you know what your child needs. Obviously we're not medically trained and I have so much respect for the jobs that all the staff do, but we couldn't stand back and have another night like the previous one and watch him suffering without a plan to help more. I returned home and Rob took over to what was another eventful night. After us asking for more they decided to finally try and few different things, first off the optiflow machine, which didn't help, then an NPA tube to hold his airways open, which didn't go in right and just caused him to gag all the time, so out it came. His nose was then all scratched up from this and he was just generally in a bad way. It seemed as though no-one really knew what step to take next, but he was eventually moved to the HDU part of the unit (and his own room) as they were going to attempt the NPA again in the morning. But somehow during that time they finally realised that yes, he needed CPAP, and a move down to PICU was imminent.

When I heard this news I wasn't worried, I was thankful that he was finally going to getting what he needed. Obviously he was in a bad way, but in my mind he was only going to be on PICU because that was the only place he could have CPAP used to begin with. But it was scary going back there. Because we couldn't stay on the ward both Rob and I returned home that evening, for the first time in over a week, but it brought back so many of those memories of leaving him there when he was so small, when we had no idea how long he was going to be in for or what was happening. But this time was different at least, we knew he responded well to CPAP and that when he was awake he was well. When we arrived after he'd been moved they had put down an ng tube, as well as an IV cannula in his hand. This I think was the most shocking, as it had been so long since he'd needed something like this. We were still unsure as to why he actually needed the ng, because he was still able to take food orally, but I think on PICU its more or less standard practice to put them in, just in case they need direct access etc. Suddenly he wasn't just Rohan having a little trouble breathing when he was asleep, he was in full on intensive care, with wires, tubes and machines. But I felt relieved. Relieved that we had finally been listened too, relieved that he finally looked so much more settled when he was asleep, and relieved too I guess that we could get a few nights of good rest. Leaving him was obviously so hard, but we were both so exhausted.

I've lost count of how long he was on PICU for, maybe three days or so, but as it was the weekend things all went quiet and we were left to more or less just get on with his care as usual, all the while just waiting for the new week to start and work towards getting off the ward. We again insisted that if he was showing signs of wanting milk orally that he be allowed to, as we'd worked so hard to get him taking his milk that way that we didn't want to relapse. And he did show that he wanted it and soon we were making our way back to his normal feeding schedule. We sat in our bubble of our routine and playing when Rohan was awake, he charmed the nurses with his smile and was generally pretty happy and content like usual. It was a relief to have him back but I felt strange being on intensive care with a baby who didn't look like he should be there. So many things were going on around us, people's lives going through unthinkable things, seeing families day in day out sitting with their sick children. It's a world I wish I'd never been invited into, to see behind those doors where things are so black and white but at the same time not straight forward at all. Where lives are changed and there is sadness as well as victories.

Eventually we were discharged from PICU and moved back up to HDU, with his CPAP. We were waiting on one lady to return to work so she could train us on the machine which we would take home with us. The weekend passed without much drama, just more waiting. You get used to a certain amount of just waiting around for one thing or another in hospital. We've worked out that really you need to add a few hours or a day or two on to most onto any timeframe that they give you. I feel like I've been a bit down on the care and the NHS in this post, so I just wanted to stress that however frustrating it can be and how long sometimes we have to wait, we're just so thankful for all that the hospital, doctors, nurses and everyone has done for us and continue to do. It's hard to imagine what our lives would be like without every single one of the services that we get, the equipment and medicine that we receive, all for free. Yes it can be ever so slightly frustrating sometimes, but when you realise how much they are doing, how over stretched the services and staff are then suddenly it doesn't seem too bad.

So after our weekend we waited a few more days and eventually got signed off on the equipment, and all of a sudden we were free to go. It felt a little surreal to just be able to walk out and be free. And there we are, our second hospital stay. It was the first of March, and the beginning of a month of recovering, for me both physically and mentally. I really don't think I processed any of what had been going on, just being in the mindset of just keep going and dealing with each day as it came. We were functioning on very little sleep, stress of seeing our boy in distress and juggling Theo and normal life. It took me a lot longer than I thought it would be realise what we'd just been through and the affect it had on us all. Rohan was doing a lot better, but we were still struggling with his sickness and a few weeks ago it all got too much. I think it all caught up on me, and after a few nights of bad sleep, exhaustion kicked in and I admitted defeat. It's scary when you don't really feel in control of your emotions or able to be there properly for your children's needs, but thankfully we were once again listened too and with the help of a lovely GP we were set up with new medication. I think I felt I just needed someone to listen. So that's where we are, but now we're facing our next challenge that is cardiac surgery next week, but I think I'd better write another post about that soon...


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