Day 27 - Sunday 16th July 2017

Lisa called me at 6am (shortly after she went over to see Theo) and said that he was really, really unwell again! I got up and went over to the NICU and was shocked at how unwell Theo looked within the space of a few hours! He looked worse than he did 2 days ago and was not responsive to my voice or touch again.... he looked like he wasn't going to make it through the morning!!! I asked the night nurse what had happened throughout the night and she got quite defensive, she said that he had been unsettled most of the night and had been messed about with quite a lot.... she said that he had also had quite a few bad Brady's throughout the night and his ventilator tube had been moved again as it had slipped??? The doctors have been discussing if they should change his tube again as it was really squeaking, but they were still undecided as to whether to do it or not...... When I was doing his cares with Lisa, I noticed that his bedding had been changed through the night!!!! I couldn't believe it, I was fuming 😠 ..... we specifically asked her not to change it last night as he hasn't liked being handled the last couple of days and she had gone and done it anyway!!!! It was completely unnecessary, causing him stress... WHY??

I had concerns about her hand hygiene from last night so was watching her when she needed to remove his cannula and give him his meds. She washed her hands and created a sterile environment but then used the calculator on her phone before removing his cannula without putting on any gloves!!..... she ended up with his blood on her bare fingers which she wiped on his bedding, and then proceeded to wrap her hand round his face while she picked him up for his x-ray!!! Now, I know I am under a lot of stress and I feel completely out of control in this situation.....and I'm probably just upset about how Theo looks this morning and trying to find fault with her, but seriously?? I didn't say anything because her shift was coming to an end, but after she left I had to go in to the family room to calm down for a bit because I was so mad with myself for not stopping her in her tracks... it's really hard because you don't want to annoy a nurse who you know might have to look after him again in the future.... and you don't want to get a bad name for yourself as being a complaining parent, bearing in mind we have already complained about one nurse, but in the same breath, Theo hasn't got a voice and cannot help himself, so we have to stand up for him 😢😢

Don't get me wrong, aside from the infection control issues, I dont think she is a bad nurse, moody yes, and clearly doesn't like working nights! but I don't think there was any malice in what happened last night. I think she just got herself in to a vicious cycle by moving him initially to change his bed and then because he is already poorly and the doctors were checking him all night, she's found herself having to mess with him all night.... the more she messed, the more bradys he had and the more unsettled he was!.... That being said, she should have respected our decision when we said don't change his bedding! Thankfully the really nice experienced nurse was looking after him on a long day again today so Lisa and I asked her to make him better, which she really did! The doctors came on to the ward at about 7:30am and made the decision to change his tube, as well as doing another echo on his heart...... thank god!! Lisa broke down with releif because we knew something was wrong with his tube and we believed changing it was going to make him a bit better. They changed his tube from a 3mm to a 3.5mm and he was a completely different baby! He got a bit of his colour back and became much more settled.....The tube they took out was coated in gunk, a lot more than the last time and the day nurse said that it could have caused the infection..... the squeaking had stopped and he didn't seem to be in as much pain when being handled anymore..... although he was still on morphine and was in discomfort from his tummy... The doctors said that the old tube could have been irritating a nerve which could have been making him have really bad Bradys and de-saturate every time he was moved!! Poor baby, he was already in a lot of pain with his infections, so that tube must have been causing him even more pain and discomfort. We have been with Theo all day, every day for the last 27 days, and we know everything about him..... there are over 250 nurses and doctors on the NICU and to date he's probably had around 50+ different ones looking after him...... it would be impossible for them to know Theo as well as us.... they can only rely on notes and what has been said on the last handover...... so much can get lost in translation and there is a a lot of talk with the doctors about family intergrated care on NICU to prevent this in the future, but unfortunately it's not been implemented as yet, so Lisa and I just need to continue being our son's voice and remain fully involved in his care..... he's our precious baby ❤❤❤ When I was comfortable that Theo was going to be ok, I went to pick Jack up from Lisa's mums and I took him up to bleakholt to see our two dogs. They had just had a fight with each other!! 🙈🙈 Coco had 5 cuts on her head and Bobby had 1 under each of his front armpits! Numptys'.... it didn't stop them going crazy when they saw us though.... we took them for a walk, then a play on the field and then to the cafe for a brew. I spoke to one of the workers about the fight and she said they had been sharing a small kennel so had just had enough of each other...... she said that they were going to give them a bigger kennel so that they can have their own space..... Jack was really sad to leave them again but he soon cheered up when we got back to Lisa's mums and had a lovely Sunday dinner 👍😁 I brought a dinner back for Lisa and she ate in in the ward kitchen..... Theo had a much better day and the nurse took really good care of him throughout the day like I knew she would... 😁 We were talking about how Theo was this morning and she said that the nurse from last night had called the ward earlier to check on Theo..... she must have been really worried about him..... Fortunately his night nurse tonight has agreed to let him rest as much as possible, she was nice and really listened to me and Lisa..... We waited for the night time ward round and spoke to the doctors about a few different things.... they said they were happy with his recovery so far and would see how he is in the morning before changing anything.... It looks like the antibiotics are fighting the sepsis infections and he's fought his way through the weekend, albeit against a bit of wind! It's been one hell of a scary 3 or 4 days, but it looks like my little solider is now on the mend ❤❤❤ however his Echo has shown that his PDA has opened again and is large again.... the doctors said it was most likely because of the infection!! 🙈 but that they would just monitor it over the next couple of weeks..... Tomorrow is another day.... I can't believe he will be 4 weeks old tomorrow 😁 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:

#StMarysNICUManchester #RonaldMcDonaldHouseManchester #Theosnicujourney