Day 12 - Saturday 1st July 2017

Lisa was up early today and went over to see Theo at about 6am. He needed a new ET tube this morning as he had grown out of the old one.... Lisa stayed outside the room whilst he had it done as she wasn't allowed to watch (not that she would have wanted to!!) I got up around 7:30am and was trying to battle Jack out of bed..... to no avail. He's had a couple of late nights at his mates so was knackered! I finally managed to get him up and had to drag him in to the shower before going over to see Theo for the ward round..... teenagers!! Theo had just had an x-ray and the results came back showing that the new ET tube needed pulling back 0.5cm as it had been pushed down a little bit too far. Lisa said she thought it was too low as you could see his tummy moving rather than his chest. On the ward round they said he was doing well again now that his ET tube had been changed and his ventilator had been turned back up. However, he was still de-saturating quite often so we needed to keep a close eye on him. My sister and my neice came up to see us with our little nephew today which was nice. I played with him and Jack for a while in RMH back garden until Lisa came over. Then I took them both over to see Theo while Lisa continued to entertain our nephew. My neice watched me change Theo's nappy and he pooed whilst I was doing it 🙈🙈; and then my sister watched me feed him.... though I'm not sure she could see anything through the tears that were streaming down her face 😢 😢😢 He continued to de-saturate throughout the day. When the doctors came round in the evening they said he needed another blood transfusion but he didn't have a canular in..... so they needed to do that first.... They also said he would need an echo throughout the night to check the valve on his heart (PDA)...... I hope everything is going to be ok... I'm worried about him de-saturating all the time because he's not getting enough oxygen around his body and in his brain when he does it.

Leanne came up to see us later in the evening and then took Jack for a sleepover at her house. They are going to go out and have some fun tomorrow so Jack was happy to go..... he's stopping out a lot lately, in fact, he's probably stopped out more in the last two weeks, than he has in the last 5 years!! We need to try and protect him from the trauma that living here like this may cause, by keeping him busy and entertained with freinds and family...... Theo started to open his eye a tiny little bit today, so I told the nurse to call me if it opened any more, no matter what the time was, as I wanted to be there when he opened them 😁 He is still doing great with his feeds and has gone up up to 6ml every hour now..... almost there little man, just got to get to 7ml and then you're at the max for your weight ❤❤ 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:

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