Day 8

Here's the latest from BCH...

Lindsey's having a few problems updating the blog from her phone, so this is her friend Ali with a quick email update about yesterday...
Thomas was given a large dose of warfarin (6mg) on Wednesday night to make his blood thinner, as it was still a bit too thick while he was on heparin.
It's important his blood isn't too thick, because as part of his Fontan, the surgeons inserted a plastic conduit to channel his blood to the right place. Because this tube is a 'foreign object' as far as his body is concerned, his blood would tend to form clots around it - which would not be good. Hence the need for anticoagulants, to keep his blood flowing smoothly through the tube.
But because of the high warfarin dose, Thomas's INR (blood thinness measurement) was too high yesterday at 4 (needs to be between 2-3), but this meant this meant he could be taken off his heparin infusion, and consequently lose another cannula!
This is great news - there really aren't too many wires left now!!
Thomas's remaining drain is still putting out some fluid, but the levels are dropping nicely - 350mls on Tuesday, 240mls on Wednesday and only 120 mls yesterday, so things are definitely heading in the right direction!
You don't really want the drainage to stop overnight, because that would probably mean the drain was blocked, so slow and steady reduction is definitely the way to go! The doctors will usually remove the drain once it is consistently draining 40mls or less.
Thomas was up and about again this yesterday with his trolley, and enjoyed a trip to the playroom. (see attached pic.)
He is still quite hunched over when he's walking, but is improving every day.
The ward was noisy last night, but Thomas managed to sleep through it.
They are waiting now for the doctors to do their rounds today, to find out the latest news.
So everything is going really well! What a star he is!

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Testing. . . .Testing. Yesterday's messages and pics hav disappeared so just sending a test.
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For some reason this post disappeared. . . . Thomas has had a cannula removed today, a couple of plasters and the sticky dressing they put on the central line. It took a while and was a bit of an ordeal to be honest but we got there. Of course i didn't thk to practice removing things in our hospital play, just putting them in! He's still doing well and his chest drain drained a bit less yesterday so that is good. I hav met a family today the young man is 17.5yrs old and hlhs (the oth side 2 Thomas). He was in for a cardiac catheter. His dad was one of the families that set up left heart matters - the charity that is now Little Hearts Matter - all those years ago. Had a lovely chat with mum and dad and then they introduced me to Jack. V inspirational - he got 11 GCSE's and is running his own little business. A small slipper shop. It's always a real boost to meet young adults with half a heart. He's not always had it easy but he's a very independent inspirational young man.
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Pancakes anybody?--
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On his way to playroom.--
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Thomas has had a cannula removed today, a couple of plasters and the sticky dressing they put on the central line. It took a while and was a bit of an ordeal to be honest but we got there. Of course i didn't thk to practice removing things in our hospital play, just putting them in! He's still doing well and his chest drain drained a bit less yesterday so that is good. I hav met a family today the young man is 17.5yrs old and hlhs (the oth side 2 Thomas). He was in for a cardiac catheter. His dad was one of the families that set up left heart matters - the charity that is now Little Hearts Matter - all those years ago. Had a lovely chat with mum and dad and then they introduced me to Jack. V inspirational - he got 11 GCSE's and is running his own little business. A small slipper shop. It's always a real boost to meet young adults with half a heart. He's not always had it easy but he's a very independent inspirational young man.
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Not much news to tell today. Thomas had a pretty good nite's sleep, as good as u can get on a hospital ward. He's had his central line removed today from his neck. His right chest drain is still draining quite a bit. All his numbers are where they should be, sats sitting nicely in the low 90's. He looks better and is much more himself. He asked to play his DS first thing which for me is a good sign :-)
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Concentrating on Super Mario Bros :-)--
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Showing Alex his new toy :-)--
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I'm off to the playroom. . . slowly but surely on the way there but more confident on the way back.--
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My two gorgeous boys x--
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Here's Thomas with all the post he received today! Wow! He had 10 cards, a balloon in a box, some parcels and some lovely pictures. Thanks to u all - he was pleased as punch. He's still doing well. His sats are in the low 90's which is where they like them. His chest drain drained a bit more yest but that's normal. He started his warfarin last nite and has been taking his medicines better today. Thank goodness. He was making cakes on his bed this mornin and doing some work on the computer. All that wore him out so he had a good sleep and then his best mate came to see him :-) He was determined to get to see Alex and Samuel in the playroom so that encouraged him to get on his feet and get walking. He took it slow and steady and altho he's a little hunched over he did gr8. The more mobile the better as this gets everything working again. And guess what . . . . He asked to play his DSI :-) this is the first time he's wanted to play it since his op. For me that's a good sign :-) --
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A genuine smile from our wonderful boy! We're just starting to see signs that the old Thomas is coming back. It is so lovely to see a couple of spontaneous smiles :-) we had a good nite. He's being really rascally taking his medicines tho. It took 45 mins in the nite and was a real battle. I suppose it's only to be expected after everything he's been thru but it's frustrating as he needs them to get better. We have tried one in tablet form this mornin and that was a bit easier. I'll report back afta the docs round to see what the plan for the day is. --
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Yeh! thomas has had a little walk :-) and we hav moved bedspace to number 4 which has a bit more room and where camp beds are allowed. He keeps getting acute back pain which is all down to his drains. So horrible to see him in pain. I've been rubbing his aching back for him. Here he is looking a little happier in the chair. All his smiles are forced at the minute but each day there are slight improvements. --
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On his feet for the first time since the op! Bless him. Not taken any steps yet apart from shuffling backwards to the chair but progress nonetheless. As soon as he starts being mobile his sats should go up to the low 90's which is where they like them to be. There's talk of taking his pacing wires and 2 drains out tomorro but we shall hav to wait and see. That would be gr8 as it'll make it a bit more comfortable for him. We're hoping to move bed spaces today. There's v little room where we are and we can't hav the camp bed up so Paul and I are taking it in turns to 'sleep' on the chair. Not ideal, but it's nothing to wot T is going thru but so far so good. --
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It is sooo lovely to see our little Pickle Pie today. Mum and dad are doing a fantastic job looking after him. I really don't know what we would do without their help and support. It makes it sooo much easier to know he is being looked after so well so we can concentrate on Thomas at this time. --
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With his balloons from 'funny Gen' :-) x--
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Out of bed in the chair. More comfy today x--
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Thomas had a comfortable night. Slept for most of it but woke at 3am and wanted to watch The Polar Express. They're going to change his dressing today and maybe start to wean him off the morphine. He's doing so well. Taking small steps in the right direction. --
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Snoozin with Jez with a little bit of colour in his cheeks x--
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