Multimedia message

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.--
This Orange Multi Media Message was sent wirefree from an Orange MMS
phone. If you would like to reply, please either text, phone or send
a photo message to the sender directly by using the phone number listed
in the sender's address. To learn more about Orange's Multi Media
Messaging Service, find us on the Web at http://www.orange.co.uk/mms

Multimedia message

Playing with lego on his bed. --
This Orange Multi Media Message was sent wirefree from an Orange MMS
phone. If you would like to reply, please either text, phone or send
a photo message to the sender directly by using the phone number listed
in the sender's address. To learn more about Orange's Multi Media
Messaging Service, find us on the Web at http://www.orange.co.uk/mms

Multimedia message

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.--
This Orange Multi Media Message was sent wirefree from an Orange MMS
phone. If you would like to reply, please either text, phone or send
a photo message to the sender directly by using the phone number listed
in the sender's address. To learn more about Orange's Multi Media
Messaging Service, find us on the Web at http://www.orange.co.uk/mms

Multimedia message

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.--
This Orange Multi Media Message was sent wirefree from an Orange MMS
phone. If you would like to reply, please either text, phone or send
a photo message to the sender directly by using the phone number listed
in the sender's address. To learn more about Orange's Multi Media
Messaging Service, find us on the Web at http://www.orange.co.uk/mms

Multimedia message

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!--
This Orange Multi Media Message was sent wirefree from an Orange MMS
phone. If you would like to reply, please either text, phone or send
a photo message to the sender directly by using the phone number listed
in the sender's address. To learn more about Orange's Multi Media
Messaging Service, find us on the Web at http://www.orange.co.uk/mms

Multimedia message

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. --
This Orange Multi Media Message was sent wirefree from an Orange MMS
phone. If you would like to reply, please either text, phone or send
a photo message to the sender directly by using the phone number listed
in the sender's address. To learn more about Orange's Multi Media
Messaging Service, find us on the Web at http://www.orange.co.uk/mms

Multimedia message

Making finger puppets while pretending to be a dog ;-)--
This Orange Multi Media Message was sent wirefree from an Orange MMS
phone. If you would like to reply, please either text, phone or send
a photo message to the sender directly by using the phone number listed
in the sender's address. To learn more about Orange's Multi Media
Messaging Service, find us on the Web at http://www.orange.co.uk/mms

Multimedia message

On the look out for pirates!--
This Orange Multi Media Message was sent wirefree from an Orange MMS
phone. If you would like to reply, please either text, phone or send
a photo message to the sender directly by using the phone number listed
in the sender's address. To learn more about Orange's Multi Media
Messaging Service, find us on the Web at http://www.orange.co.uk/mms

Multimedia message

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.--
This Orange Multi Media Message was sent wirefree from an Orange MMS
phone. If you would like to reply, please either text, phone or send
a photo message to the sender directly by using the phone number listed
in the sender's address. To learn more about Orange's Multi Media
Messaging Service, find us on the Web at http://www.orange.co.uk/mms

Multimedia message

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--
This Orange Multi Media Message was sent wirefree from an Orange MMS
phone. If you would like to reply, please either text, phone or send
a photo message to the sender directly by using the phone number listed
in the sender's address. To learn more about Orange's Multi Media
Messaging Service, find us on the Web at http://www.orange.co.uk/mms

Multimedia message

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--
This Orange Multi Media Message was sent wirefree from an Orange MMS
phone. If you would like to reply, please either text, phone or send
a photo message to the sender directly by using the phone number listed
in the sender's address. To learn more about Orange's Multi Media
Messaging Service, find us on the Web at http://www.orange.co.uk/mms

Multimedia message

Two cheeky chappies x--
This Orange Multi Media Message was sent wirefree from an Orange MMS
phone. If you would like to reply, please either text, phone or send
a photo message to the sender directly by using the phone number listed
in the sender's address. To learn more about Orange's Multi Media
Messaging Service, find us on the Web at http://www.orange.co.uk/mms

Multimedia message

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. --
This Orange Multi Media Message was sent wirefree from an Orange MMS
phone. If you would like to reply, please either text, phone or send
a photo message to the sender directly by using the phone number listed
in the sender's address. To learn more about Orange's Multi Media
Messaging Service, find us on the Web at http://www.orange.co.uk/mms

Multimedia message

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. --
This Orange Multi Media Message was sent wirefree from an Orange MMS
phone. If you would like to reply, please either text, phone or send
a photo message to the sender directly by using the phone number listed
in the sender's address. To learn more about Orange's Multi Media
Messaging Service, find us on the Web at http://www.orange.co.uk/mms

Multimedia message

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--
This Orange Multi Media Message was sent wirefree from an Orange MMS
phone. If you would like to reply, please either text, phone or send
a photo message to the sender directly by using the phone number listed
in the sender's address. To learn more about Orange's Multi Media
Messaging Service, find us on the Web at http://www.orange.co.uk/mms

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!

Multimedia message

Testing. . . .Testing. Yesterday's messages and pics hav disappeared so just sending a test.
--
This Orange Multi Media Message was sent wirefree from an Orange MMS
phone. If you would like to reply, please either text, phone or send
a photo message to the sender directly by using the phone number listed
in the sender's address. To learn more about Orange's Multi Media
Messaging Service, find us on the Web at http://www.orange.co.uk/mms

Multimedia message

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.
--
This Orange Multi Media Message was sent wirefree from an Orange MMS
phone. If you would like to reply, please either text, phone or send
a photo message to the sender directly by using the phone number listed
in the sender's address. To learn more about Orange's Multi Media
Messaging Service, find us on the Web at http://www.orange.co.uk/mms

Multimedia message

Pancakes anybody?--
This Orange Multi Media Message was sent wirefree from an Orange MMS
phone. If you would like to reply, please either text, phone or send
a photo message to the sender directly by using the phone number listed
in the sender's address. To learn more about Orange's Multi Media
Messaging Service, find us on the Web at http://www.orange.co.uk/mms

Multimedia message

On his way to playroom.--
This Orange Multi Media Message was sent wirefree from an Orange MMS
phone. If you would like to reply, please either text, phone or send
a photo message to the sender directly by using the phone number listed
in the sender's address. To learn more about Orange's Multi Media
Messaging Service, find us on the Web at http://www.orange.co.uk/mms