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This is Thomas showing off the ben 10 puzzle ball we made this mornin b4 his catheter. He wasn't happy this mornin. He was hungry and grumpy and so we just tried to keep distracting him. He finally went down at 2.45pm. I'll never get used to handing him over. I stay so strong until he falls asleep and then i fall apart. Anyway the results are good. His fenestration is the right size, his pressures are good, everything is where it should be. They just blocked off a collateral. So no magic answer to why he's still draining but we do know that nothing sinister is going on and just hav to sit and wait. Bless him. Compared to the magnitude of the op it was a simple procedure but still an ordeal 4 Thomas and us too. --
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Thomas complete with completed puzzle ball jigsaw. We're trying to distract him as he's really hungry while he waits for his cardiac catheter. It is 'supposed' to be 1pm but we shall hav to see. . . Drain total for yesterday was 210mls.--
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Here's Thomas enjoying his tea - spag bol. The scores on the door were 205 mls of drainage in total yest. It's still coming today. Nana and Grandad came to visit again today then Thomas went to the play centre to play on the Wii. He's been doing lots of walking to try and get this fluid out as mobility really helps. He's hopefully having a cardiac cath tomoro afternoon but they don't seem very certain which isn't a good sign so i'm not expecting it to happen. They've changed one his diuretics and started a new medicine as a trial to see if that helps settle the fluid. He's doing ok in himself - as much as is possible in hospital. He had a much better sleep last nite tho which can only help. --
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Here he is eating his spag bol xxx--
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We moved wards today back to the original ward 12. It's much better and we're in a room with 2 beds so we're sharing with another little boy. There's not quite as much room as the open bays further down but it's much quieter. There's no parent room either but u can't hav everything. Thomas has had a pretty good day. A visit from friends this mornin and his other cousins this afternoon has helped. His INR was 2.2 today and his drain is currently at 150mls. I went home to see Samuel this afternoon it's so lovely to go home and see him Mum and Dad are doing a sterling job. It makes me feel a bit sad wen i hav to leave, i just want us all to be home together it feels like ages.
--
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Here's Thomas taking his toys for a walk up and down the ward. I thk the finally scores on the doors yesterday ended up at 255mls. They changed his bucket this mornin then he only drained 10mls all day. They did an ultrasound and eventually flushed the drain and out came an 'alien' and 70 mls of fluid behind it. It's drained some more since but i'd rather that than a blocked drain. The fluid seems clear which means the diet is working. Cardiac cath booked for Tues arvo. Thomas been a bit tired and emotional at times today. The lack of sleep is really catching up with him. A visit from his mate Alex and his cousins helped his mood tho. I'd have been cheesed off a long time ago if i was him. I've been amazed at his compliance and acceptance overall so far. Wld just love to take him home but we need this drain to stop first.--
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Playing with lego on his bed. --
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Thomas was learning circus tricks this mornin. Here he is spinning plates. He's still draining, 200mls so far today. They're going to do a cardiac catheter early next wk to see if anything needs fine tuning. It's quite common for fluid to seep after a fontan op as it completely changes the circulation. I was just hoping Thomas might be one of the lucky ones who dries up quite quickly. He's fine in himself tho. Tired from lack of sleep but other than that doing gr8.--
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Thomas was learning circus tricks this mornin. Here he is spinning plates. He's still draining, 200mls so far today. They're going to do a cardiac catheter early next wk to see if anything needs fine tuning. It's quite common for fluid to seep after a fontan op as it completely changes the circulation. I was just hoping Thomas might be one of the lucky ones who dries up quite quickly. He's fine in himself tho. Tired from lack of sleep but other than that doing gr8.--
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Here's Thomas with today's visitors Milly and Hannah :-) After such a brilliant day of minimal drainage yesterday (15mls in the end) today Thomas has gushed it was like somebody turned the tap on. So far today the scores on the doors are 300ml. 300 MIL i can hardly believe i'm typing it. Anyway the doc thinks there may hav been a plug with a pocket of fluid behind it that that drain couldn't reach. The plug has moved and opened the flood gates. It feels like such a backward step. He hasn't drained this amount for 10days. A catheter is on the cards for monday unless anything drastic changes. I'm taking comfort in the fact that Thomas is really perky in himself, happy as larry in fact and all his obs are ok. His blood count is slightly low but they're not worried abt that. They will maybe give him some iron supplements. Lets see what tomorrow brings. Onward and upward!--
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Here's our boy at the hospital playcentre this mornin. He went down to play on the Wii and had a go on the train table as well. He's only drained 10 mls so far today which is gr8 but his test came back positive for chylothorax :-( this is a lymph vessel that has been damaged or irritated by the surgery and as a result oozes fat. A fat free diet for a number of wks allows the vessel to rest and heal. A fat free diet isn't ideal and it does feel like a bit of a setback but i'm looking at it as a minor blip. No point feeling sorry for ourselves we'll just get on with it. Thomas is fine in himself and the docs are v pleased despite this little hiccup. Thomas' school friend came to see him this afternoon which was gr8. It's always nice to see familiar faces. --
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Making finger puppets while pretending to be a dog ;-)--
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On the look out for pirates!--
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Fresh air for the first time in almost two wks! We got off the ward today and went to the outdoor play area. It was gr8 to have a change of scenary and for Thomas to breath some real air. His fluid seems to be clear today. He'd drained abt 80mls tho by 10pm this evening. They said the policy here is to do a cardiac catheter if a child is still draining 2wks post fontan. They are happy that Thomas' has reduced and are hoping it stops in the next few days otherwise they'll do a cath at the end of the wk. I know they know wot they're doing but i hope we can avoid this. He's fine in himself, looks good, sats and obs all fine. It would be such a shame to hav to hav a cath for a few mls of fluid. Keep ur fingers crossed this doesn't happen. His INR was 2.3 today so spot on. He's gained some weight so all looking good we just need the drain to stop please. I'm missing Samuel as not seen him since Sunday I want to try and see him tomorro, Paul needs to work as well and we don't like to leave Thomas on his own so it's a bit of juggling act at moment.--
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Thomas drained 70mls in the end yesterday. Docs were happy this mornin. Said the drain being in creates a bit of fluid so it doesn't hav to stop completely but they hav to weigh up wen they thk the best time is. You certainly don't want one being taken out too early. This afternoon the fluid looks more milky which could mean chylothorax - fat in the fluid. It's a consequence of cardiac surgery and means. If this is the case Thomas would hav to go on a special fat free diet for 6 wks. Not ideal esp wen he has lost weight following the surgery. We get the results in 2 days. Fingers crossed it's not chylothorax. Thomas is fine and dandy in himself. Callum has gone on home leave and Luke had his op today so he'll miss his mates. Doing so well bless him x--
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Here's my rascal chops! He's had another good day. Drained 90 ml in the end yesterday so slowing down nicely (something must hav been going on the day b4). It's on 40 ml so far today. INR is 2.4 today so that's on track too. I've been home today to see Samuel. It was gr8 to spend some time with him. It was also wonderful to hav one of mum's roast dinners. Absolutely delicious and i brought a plate back for Paul as well so he didn't miss out. It was gr8 to be home but also a bit strange because Thomas wasn't there. I'm looking forward to us all being together again wen the time is right. T has been playing with his mates on the ward. They have been bed hopping playing DS and other bits and bobs. Lets see what tomorro brings but so far so good again x--
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Two cheeky chappies x--
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Thomas has had a gr8 day. Been playing pretty much the whole day with either visitors or mates on the ward. It is SO lovely to hav our boy back. His INR is too low today at 1.7 so they need to adjust his warfarin. His drain is slowing down, is abt 70mls so far today. (We thk yesterday's reading wasn't accurate as it was knocked). Sats still sitting nicely around the 90 mark so all is good :-) Paul has been home today and i'm going tomorro. I'm very much looking forward to spending the day with my little sampickle. --
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Thomas has had a gr8 day. Been playing pretty much the whole day with either visitors or mates on the ward. It is SO lovely to hav our boy back. His INR is too low today at 1.7 so they need to adjust his warfarin. His drain is slowing down, is abt 70mls so far today. (We thk yesterday's reading wasn't accurate as it was knocked). Sats still sitting nicely around the 90 mark so all is good :-) Paul has been home today and i'm going tomorro. I'm very much looking forward to spending the day with my little sampickle. --
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Here's Thomas with his little cousin Charlie who came to visit again today. Thomas' INR is within the right range today at 2.3 he's not too keen on having the finger prick test but we shall work on that. His drainage is down again . . . only 35 mls today so far altho they can tend to drain quite a bit night. Thomas has been out of bed more than ever today. Still needs little breaks and walking with a hunch but doing incredibly well. Paul and I are SO proud of him we could literally burst. So far so good for day 9 post op :-) x--
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