We had a wonderful Halloween party when Rory came to visit. He went back to S1 and spent the weekend watching films, having cuddles and a cheeky trip to the park with me, mum and dad.
Daddy even managed to mow the lawns and Beau Jangles got green feet just in time for Halloween.
On Wednesday Rory came home for good, well at least we thought.
Nannie fetched us balloons and we had lots of fun.
We know Rory needs 24 hour care and mummy and daddy are fully trained. On Wednesday night Mummy and daddy set their alarm every hour to go in and suction him and check he was ok. He has an alarm to monitor his breathing and the video monitor is right next to mummys face and on loud so she can hear every breath. It was trying and every time the suction machine was turned on it woke us both up, which was no fun at all for anyone involved.
On Thursday night Rory had a coughing fit that lasted two hours with him struggling for breath. Mummy and daddy did their first emergency Trachy tube change and took him to A&E. They sent us home. Daddy stayed up with him downstairs because he needed suctioning every couple of minutes to keep his airway clear and safe.
Friday night, mummy and daddy were super tired and missed one of the hourly alarms and so when mummy and daddy woke around an hour and half after they last suctioned him they Found him choking on his secretions. They suctioned him and calmed him down and rang 111, they didn’t ring 999 because it was bonfire night and knew the emergency Services would be busy. We took advice from a specialist nurse and mummy and daddy continued through the night.
On Saturday the consultant rang. Rory’s secretions tested positive for a chest infection. We went through to the children’s, collected his medicine and hoped we could manage it at home. That night mummy and daddy hatched a plan. Daddy would go to bed 10pm- 2am and then mummy would help with feeds and then sleep 3 – 7am. Except when doing the feed just before 10pm mummy was nodding off. She was exhausted. So daddy did the first shift……but mummy was that tired that daddy ended up having both is ur downstairs all night whilst mummy got some sleep. He literally didn’t close his eyes.
Sunday came and Rory ended up in A&E again. Rory wasn’t feeding, he was pale and limp and struggling for breath. They kept him in, he not only had the chest infection but he had RSV and Bronchiolitis. Lethal in prems, especially as vulnerable as Austin and Rory. The chest infection was being treated with antibiotics but RSV and Bronch has no cure, the body has to fight it itself except with no immune system, Rory would find this impossible and there was always the chance it would become secondary pneumonia. Rory went from bad to worse, from no oxygen to twelve litres, to being tube fed to iv fed to being ventilated on the intensive care unit.
Meanwhile at home Austin also got poorly and had 4 Dr and hospital visits. He had the same antibiotics as Rory and managed to fight it at home. He was given two inhalers to help keep his airway open and weathered the storm.
Usually when Rory is in hospital mummy and daddy take it in turns to stay but because we were both contagious we were advised to remain separate. This was hard. Mummy and Austin at home. Daddy and Rory at hospital. Thank god for FaceTime.
Mummy kept taking clean clothes and food to the hospital and dropping it off outside. It was very hard not to see each other.
Here are some pictures from our time apart…
We watched fireworks from the window….
We shared pictures of snow….
Eventually…Rory was discharged. He wasn’t completely well but as there is nothing more the Drs can do but wait for him to get better, it was deemed safer for him at home than to risk infection at hospital.
Let’s learn to live our new life at home