Lisa's reflective account of Day 25....

Phil stayed on the unit with Theo until the early hours, he was exhausted and couldn’t keep his eyes open any longer. I was glad that Theo had opened his bowels, hopefully he would feel a little bit better as a result. Phil said that he’d had another Brady where his heart rate dropped quite low when they changed his nappy. He really didn’t like being handled at all. I got up to express and went over early to the unit. Theo was Nil by mouth but I still needed to express to keep my supply going. He had been fully fed for a while so we’d used quite a lot of what was stored in the freezer. Phil and Jack came over for the ward round and the Doctor explained the plan. They were going to do another X-ray and refer him to the surgeons for review. They had increased his ventilator settings again over night to give him a rest while he was poorly so he was pretty much back to square one with that. They increased his morphine and said to give him a bolus dose before handling him because he was in so much discomfort. He needed to have another long line put in so they could give him TPN as he would not be allowed milk again for at least 7 days. I had researched NEC on the Internet and it didn’t make for pleasant reading. For me, I find things much easier to deal with if I have all of the facts and can have informed discussions with the Drs and nurses. Later that afternoon the consultant took Phil and I into a room and asked us what we understand about the condition. I explained that I believed NEC was a serious condition that had a wide spectrum of symptoms from bloating to the death of bowel tissue that would need removing and that sometimes it could prove fatal. The Dr said there was nothing really that he could add to my explanation, and I’d obviously done my research. We discussed the management plan for Theo. He was a very poorly baby at that time and could go one way or another. I really hoped he had the strength to fight this illness. I couldn’t bear seeing him in pain and discomfort. The morphine was working for him and he was mostly sleeping. We were keeping handling to a minimum and only doing so if absolutely necessary. His blood culture results showed that there was infection in his blood. He had such a big fight on his hands. We arranged for Jack to stay out that weekend so that we could concentrate on Theo and so he didn’t have to see him so poorly. One of the Doctors who had been looking after him that week came to see him before going home for the weekend. He said he really hoped he would be ok and that he would pray for him. I was grateful for his words but it reinforced just how poorly he was. I felt so sorry for my poor little baby. I didn’t once think that he wouldn’t be ok. I couldn’t bear to do so. He needed me to be strong for him. He was being so strong and brave. He had been through so much already in his life. I wished so hard for him to get better.

Thanks for reading, please share this blog with everyone you know to extend it's reach.... Subscribe to our page to receive a notification of the next blog.... You can donate to our two amazing charities at:

#RonaldMcDonaldHouseManchester #StMarysNICUManchester #Theosnicujourney