Lisa's reflective account of Day 33....

Phil went over to see Theo early that morning and I spent some time with Jack. He was going away later, I was starting to feel really emotional about it but I didn’t let him see because I didn’t want to worry him. We had breakfast and went over for the ward round. Theo was doing really well since his infection. The main plan was to keep going with his feeds, he still wasn’t fully fed yet. We were increasing his feeds a little bit everyday. We also needed to get him off the ventilator. He was doing well with his blood gases, they had been able to reduce the pressure and his rate. Theo had a big breathing tube in for the size of him. When he was moved into certain positions, the tube would cause him discomfort, cause him to gag or stop the ventilator from delivering breaths to him. The oxygen was heated and humidified and because it was summer the air con was on and he got lots of condensation in his tube. Although it was emptied regularly, he would still get water going down into his lungs causing him to Brady and desat. The sooner the tube was out the better!! Phil packed Jack’s holiday bag and we spent some time with him before he left. He was so excited but also worried about leaving Theo. Jack hadn’t held Theo yet because it was too difficult with the ventilator. We told him that if he’s off the ventilator by the time he comes back then he’ll be able to hold him. He had wanted to hold him for so long and had been getting upset about it. He loves his little brother so much, it was just lovely to see. Jack came over to say bye to Theo, Theo opened his eyes and had his hand out stretched whist he was talking to him. Jack got really upset saying bye to him, he said Theo didn’t want him to go. I said he wants you to go and have the best time and then you can hold him when you get back. We told him we’d send lots of pictures, so he could see him all the time. He got upset saying bye to Theo but didn’t get upset saying bye to me?!!!!! Ha! Bless him 💕 When Jack left with Phil I was really emotional, it would do him the world of good having a holiday with his friend. I was so grateful to them for taking him. We would be able to stay with Theo and not feel guilty about whether Jack was ok or not. I would miss him so much though. When Phil got back, we went for some lunch and our niece came to visit as she was nearby. We stayed with Theo until late before going back to Ronald McDonald. Theo had had a good day that day. We just needed to keep going!

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