Mum here as I thought I hadn't written for a while and people might start preferring my husband's updates especially as he seems to be getting such good feedback! I'm quite impressed Gary ;-)
Mum, dad, Lucas and grandparents visited Theo today but it was quite tough going as I'm sure you can imagine. Intensive Care is no place for anyone but especially not a 2 year old who wants to run around and hide behind curtains etc. Poor wee thing ended up watching a DVD in the hospital corridor while we tried to talk to Theo's surgeon. It's also quite upsetting for grandparents to see Theo in his condition and I fully empathise how hard it is on them.
Theo is still stable but asleep and although still no backward steps, he is still very ill and there are concerns about the pressure on his body with the exomphalos. Unfortunately there didn't seem to be any 'drop' of intestines etc into his body and so they have left things as they are today to see if it goes in a bit more by itself rather than forcing it. Mr MacKinlay(Theo's surgeon) spoke to us about the condition and is very worried himself as to what they will do as there is still so much to go back in and as he said 'he can't live with his liver outside his body'. The problem is what will happen after about 10 days when the silo that is over the contents has to be replaced. They can't keep putting one on as it has to be stiched to his body so they may need to look at other options but this is the tough part. He is speaking to other surgeons about this and they will hopefully come up with something but he just kept describing it as a 'huge problem'. As you can imagine, we all left very downhearted and I'm now struggling to keep my head as high. I think the fact that he has had his eyes closed from Friday is also hard for us as it makes him seem more distant and unwell. At least when he was looking around, I was reassured that he was responsive and 'real' if that makes sense.
I'm sorry my post doesn't seem so positive and upbeat as I would like it to be but best to be honest and in some ways it probably helps for me to get it out-so to speak. I really can't begin to thank everyone for all their well wishes via texts and replies to the blog as they mean so much and I often feel like I am being 'carried' by them as I know so many of you are with us on this journey. Well I'm going to go now and have some Guiness, fenugreek tablets(which makes you smell of curry) and some brewers yeast....Dolly Parton beat your heart out when my milk comes in!! It is the only practical thing I can do for Theo at the moment so got to give it my all. Gary may add his own bit later as I think it's quite therapeutic and he seems to be quite a hit with it....we need to keep the ratings up!
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Welcome back Nic we have missed you even though Gary did a great job in your absence. ;-) It is good to hear your voice (it does really feel like you are talking to us). You have had such a tough few days, hang in there. So many people are holding you all close and sending their love and prayers and I am sure Theo can feel it. Much love Laura
ReplyDeleteHi Nic and Gary,
ReplyDeleteJust a wee note to say you are in our thoughts and prayers at this time. Iain and I read your blog every day to hear how your wee fighter is getting on. It is good to hear from both of you . take care. Much love Karen