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Well it's the last day of May and. . . . . we're still here! Thomas is fine but is still draining 150mls was yesterdays total and 120mls so far today. We managed to get outside to play today for an hour which is always wonderful. U can't beat a bit of fresh air. We had to wait for the docs round, then it was lunch time, then meds were due, then obs but we got there in the end. It is very frustrating in here especially wen u hav a well child. Things don't happen quickly enuff for my liking I'd rather do them myself to be honest. Thomas' INR was 1.9 today so creeping back up a bit more. He managed to play the Wii on the ward today too so that passed a bit of time. The play center was closed this afternoon so i was pleased they brought a Wii to his bedside. Marsha came over tonite and we went to Pizza Express for our tea. It was really nice to do something normal for a couple of hours. I feel much better for it. I'm on duty tonite so i'd better get off to sleep as who knows wot the nite will bring. Poor Paul had a bad nite as Luke's mum didn't stay last nite so he was up with him 3 times as well as Thomas havin restless sleep. We think he was dreaming. Bless him. I just cannot wait until he's back in his own bed. It feels like ages ago. . .
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Bank holidays are officially dull wen ur in hospital. The play centre is closed and the weather too grim to play outside. Nana and grandad came to visit which split the day up tho. Thomas is fine, still tired and never going to catch up while we're in here but otherwise on good form. His INR was 1.9 today so creeping back up. His drain was only 95mls yest but there was a small blockage first thing so wen that was cleared some fluid came thru which was probably yesterdays. Anyway we're hopeful it's starting to decline albeit v e r y s l o w l y. Thomas said today 'mummy i really shouldn't still be here should I?' bless him he's done so well to not get totally cheesed off b4 now. --
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Thomas has had good day. He's a bit tired but looks well and played outside for an hour. He's lost a bit of weight but i guess that's pretty inevitable on a fat free diet. He's eating pretty well tho so we can't ask for more. He's got maxijul powder in his milk that gives him extra calories and we're trying him with every high calorie/zero fat food we can think of. As result he's eating a lot of sugary foods so he's cleaned his teeth 4times today. Dwain the drain was 155mls yest and so far today he's on 95mls so far so good.
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An action shot in the outside playarea.--
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Here's Thomas today catching a few warm rays on his face. He's been fine today, he's seemed a little bit tired but the early nite i had planned last nite went out the window, as it generally does in hospital. He had a visit from cousins Katie and Charlie this afternoon then my bro brought over Taylor, my folks and sampickle :-) Thomas' INR was 1.5 today so too low which means his blood is a bit thick, well ours it between 1-2 but BCH like fontan patients between 2-3. He'd drained 140 mls at 10pm. Paul with Thomas tonite. I've come home for the night and mum and dad hav gone on 'home leave' for the nite too. --
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Having fun with the latex gloves!--
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We had a nice surprise today our little Samuel came to visit :-) Thanks to Gina 4 bringing them over. The boys seemed really pleased to see each other. Thomas was on such good form again today. He's so well, looks gr8, moving around loads. He's just getting on with his fat free diet and seems to accept that we're in hosp til the drain stops so he's enjoying it as much as is possible. We hav a lot to be thankful for. He is one very precious remarkable little boy. And he's ours :-) --
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Thomas was on really good form today. He looks gr8 and all his obs were spot on again BUT the fluid is still coming. . . . I've had a hard day emotionally. It's so tough being in here. I know there were no guarantees given abt length of stay cos each child is diff but now we're over the 3wk mark and still no end in sight. It's hard being separated from Samuel as well. It was gr8 going home but a wrench to leave. Thomas doesn't seem poorly in the slightest now so it makes it harder to be in hospital. This drain is just SO frustrating for us we're trying so hard to keep our frustrations hidden from Thomas. He does seem on good form and pretty chilled abt things. He walked down 2 flights of stairs today to the play centre and altho we took the lift on the way back it was down the opposite end of the corridor so he had a pretty long walk and wasn't puffed. Now that does feel good.
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Thomas recovered from yesterday's catheter really quickly. He was a bit tired today because his new room mate (Luke) needed rather alot of attention in the nite. Thomas managed to sleep thru most of it I was the one having to get the nurses as Luke is left by himself at nite. Anyway despite the tiredness Thomas has been fine. Ali came up to visit again all the way from Cardiff. It was so good to hav a good chin wag with her. Then Thomas and i went to the outside playground 4 a while. I've come home tonite to see Samuel. SO lovely to see him. I miss him so much. I'm sleeping in Thomas' bed tonite. I cannot wait for the day wen he's sleeping here again. I want him home so much now it hurts. I hav a lump in my throat every time i come home. Can somebody please turn his tap off. Pleeeeease. . . .
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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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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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Thomas had a peaceful night. Slept for abt an hour at a time then woke for a drink. He's still v thirsty but his fluid allowance goes up today which will help. He's doing well but sore and uncomfortable. His sats are slightly higher today, it's gonna take time for his little body to recover from the brutallity of the surgery but so far so good. Horrid to see him looking sad and speaking in a small voice you just want to make it a little easier for him. Time will help i'm sure x--
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Out of bed to be weighed bit sore and painful :-( but doing really well. X--
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Back on the ward and almost a smile :-) It's v cramped on here - not particularly conducive to sleep but we will see how he goes. Sats are now in the 80's as he's off the oxygen. They like them to be between 85-92. Once his heart is rested and his lungs and his body start recovering they should go up. It's a hard slog for the little man keep sending ur positive vibes. --
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Here's our precious boy yesterday post op. The op went well and we're just waiting to go to HDU on the ward. He's thirsty, uncomfortable and a bit grumpy but everything is where it should be and is only to be expected. We're the other side! ! ! Still a very looooong way to go but very proud of our Thomas :-) --
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Cancelled again....

Thomas' operation got cancelled on Thursday at 3.20pm. The first case was still in theatre and with the four day bank holiday weekend it meant we were sent home. We are due back in at 8am on Wednesday for his operation on Wednesday afternoon, although as we know there are a lot of variables that need to be in place in order for this to happen.

To say it's been a rollercoaster of a week is an understatement. We have tried to take our mind off things this weekend and so took the boys to Drayton Manor yesterday. We had a really good day, Thomas absolutely loved the new Ben 10 ride and Samuel enjoyed a few rides in Thomas Land.

Thomas has been a bit off colour today :-( he woke up with tummy ache and was sick before breakfast. He has been pretty ok for the rest of the day but not eaten much and not quite firing off all cylinders. I really hope he's back on form tomorrow as we don't want anything else to jeopardise him having the op this week. He's been bug and cold free for months so it feels like really bad timing. Fingers crossed he's ok tomorrow.