New normals

So it's been a minute since I was here last hasn't it? So much has happened since January and it feels like we're still in the middle of it all. We're surviving but the battle is on going.

Rohan had his original heart surgery the day after he turned four, we'd built ourselves up for this especially since it was cancelled in December. We were prepared for the two plus weeks it would take us being in hospital but we thought that would be, we'd endure it then come out the other side healed and home. But that didn't happen. Since then we've been battling fluid building up around his heart and having to undergo 6 more surgeries to try and fix it. Nothing so far has worked. He's had 8 general anaesthetics this year, we've been discharged 3 times and spent just under two weeks at home each time, he's had one CT scan, one PIC line put in and then removed, countless chest X-rays, echos, blood tests, swabs lots of new drugs started including an immuno suppressant that we had to inject daily. None of it has stopped the fluid coming back and no-one knows what's causing it.

After his first main surgery everyone was so pleased with his progress, that was until the tried to extubate him on the evening of his surgery which didn't go to plan. He stopped breathing. They had to reintubate him and he remained on that for a day or so, sedated but fairly stable. He finally was strong enough for them to try again and this time it was successful, he tolerated it well and was happy on his C-pap all the time until eventually he was weaned off to his home settings of just when he was asleep. All so positive. We moved out of PICU onto the cardiac ward and he was doing well until suddenly he wasn't. He started to work really hard with his breathing and was then moved back down to PICU where he was put on bipap and they discovered the buildup of fluid. None of this was a shock, pericardium effusions can be a normal side effect of open heart surgery. We were called at midnight to tell us they'd moved him and to expect surgery early that morning for a drain. Another consent form to sign, another GA. It all went well and we spent another few days on PICU before being moved up to cardiac again. This time he seemed so much better than the last but the fluid was starting to build up slowly once again, they weren't too worried at this point and we were allowed to go home after a little while to celebrate Theo's birthday all together at home. Rohan and I still had to travel back every two days after we were discharged for echos to check on the fluid, so home but not quite home. (I think I'm being quite vague about all of this because it's one of those things I think I've put away somewhere in my mind and I'll deal with the trauma of it later, because it's all a bit raw still.)

After a week of being at home Rohan started to go downhill again, he wasn't himself, he was cold and lethargic, and when we took him in for an echo they decided that actually yes, he needed another drain - that evening. And so he did. Another consent another GA. Suddenly it all started to become normal. This has continued since then. We've had various inputs by different teams, tests, theories but it has left so many of them scratching their heads.

Rohan's spent more time in hospital this year than he has out of it. He's had more GA's in four months that I've had in my whole life and yet we have to carry on. We have to agree to what they want to do so that he can get better. This was before the whole pandemic hit, when coming home felt safe. Now we know that coming home could be dangerous to him as he's extremely vunerable.

I've been sharing our journey on instagram as we go along, trying my hardest to stay positive about it all, but really sometimes it all just sinks in and I just question when did it all become so normal? When did it become normal to sign countless consent forms where the outcome of each surgery could be death and to not be fazed by that? When did it become so normal to inject our child with a drug to lower his immune system during a global pandemic knowing that by doing so we're increasing his risk. When did it become normal to spend months in hospital, sometimes quarantined to our room, unable to leave the hospital and just pop to the shop. When did it become normal to not quite feel that dread of sending your child down to surgery and watch his body drift off into unconsciousness not knowing how he'll be when he wakes up. When was it ok to see your child stop breathing and his saturations drop dangerously low. When did it become so normal to see him asking them to stop hurting him whilst taking bloods or putting in cannulas and not being able to do anything about it. When did it become so normal to know that he's high risk and catching this virus could be devastating for his little body that as already been through so much. All this stuff scares me but not as much as the thought that I'm becoming complacent and used to it all. It's scary that this is becoming that way.

None of this is normal though and whilst I really just try and carry on and make it seem as ok as it can be, it really isn't. Our experience isn't like those of others, we don't have the same things to worry about, to moan about as other people and whilst I don't want pity I do want people to understand that they're lucky the won't ever have to hopefully experience even 5% of what we have been through. I know life is tough for us all, we're all experiencing such great trauma to our lives but somethings don't just stop because a pandemic is on. There's still more surgery, there's still more risks, there's still more times spent apart as a family, all wishing we could be back at home for good and appreciating the time we have together, the things we have that we're grateful for.

So for now I'm going to continue to carry on appreciating the things we have, like outside space, the ability to buy ourselves food, for Rob to still have work, for exciting things like new chickens, for Theo being healthy, for living in the countryside, for those evenings we have together. It's all a distraction but I've just got to embrace it. Until Rohan can come home and we can get through all of this.

 Photos are all from January spent in hospital.


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