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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.

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Pretty noisy on the ward last nite and T was up at 5.30am wanting to play his DSI :-) He had to hav breakfast by 6.30am tho so that did give me chance to get a big bowl of crunchie nuts and a slice of toast down him. He's now happily playing. He said 'it's a big day for me mummy isn't it'. It certainly is bless him. I could quite easily pick him up and run for the hills but equally i'd rather not put it off any longer and just want to get to the other side of it. Keep everything crossed for him today. Lets hope he uses that steely determination of his to come thru smoothly and safely.
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We're here all installed on the ward. (Ward 12 is being refurbished so it's moved to ward 5). Thomas has had all his observations. Sats 84, weight 19kg he's had an ECG, chest xray and his cannula is in. He has been an absolute star so far! He's on the list for surgery tomorro afternoon. Fingers crossed it goes ahead otherwise we'll be sent home for the wkend which we really don't want to happen. The surgeon has been and was v positive abt the operation, obviously there are risks but Thomas is in the best group to be having this type of op. So far so good. Please keep everything goes ahead as planned tomorro and our precious boy does really well.
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No bed...

Just called the hospital and apparently there is no bed available on the ward. They want to keep us on hold and will call us when they know the definite position. Hmmmm......watch this space!

Back home....

Well we called this hospital at 9am this morning and was told there was a bed for Thomas and we should report to the ward by 1pm. So, after having a bit of a panic at the reality of the situation, we gathered all of our stuff and off we went only to be told, the minute we arrived, that there was a very poorly baby who needs an operation tomorrow and therefore Thomas' operation would be Thursday at the earliest. Initially we all felt pretty fed up, we absolutely appreciate and accept the emergency situation we just wish we hadn't actually arrived on the ward. A simple phone call would have saved us packing the car up and getting ourselves all psyched up but in the grand scheme of things I suppose it's better to be at home rather than hanging around waiting in hospital.

So, we decided to go out for Thomas' favourite tea which is Harvester ribs. It beats hospital food that's for sure :-) Paul and I are both feeling a bit shattered this evening, it's been a bit of an emotional rollercoaster today and so an early night is in order. Lets see what tomorrow brings........

Fontan Operation

Well, here we are one sleep to go until we are due in hospital for Thomas' Fontan operation.

He's actually looking forward to getting his heart fixed and has been counting the sleeps. We have spent many hours playing at 'getting my heart fixed' and swallowing tic-tacs in one go (Thomas will be on warfarin after the op and we are told the tablets taste disgusting when they're diluted so it's better all round if you can just knock them back). He knows he's going to be sore and uncomfortable, he know all about the mini shopping trolley he will have to carry his buckets and all the other horrible bits but he has also seen how this operation can make a big difference. We met Ali and Charlie Turner through Little hearts Matter when I was pregnant with Thomas. We are now great friends whose boys just happen to have similiar heart conditions. Thomas has seen how the Fontan has made a difference to Charlie and can't wait to try and keep up with him. It's really lovely hearing them talk about their hearts and share their stories.

I think we're as prepared as we can be for this operation. There really is only so much prep you can do and while I would like to avoid it forever I know it's got to happen so just want to get on with it.

We've spent the last week at the caravan in Cornwall. The weather was fantastic and we spent every day on the beach, riding the sand dunes, building sand castles and paddling in the sea. It was a brilliant distraction and we had a lovely time. I was amazed at how far Thomas walked (at his own pace) and seeing him clamber up the sand dunes you would never believe he only had half a heart and was due a major op. He's a very cute character though, he knows what he can do and if he can get other people to do stuff for him he will. There is definitely a BIG difference to Thomas' activity levels compared to his peers. The other kids were bounding up and down the sand dunes 3/4 times compared to Thomas' one BUT he was there enjoying it just the same and why carry the sand board up the dunes yourself when you can get your mate to do it for you ;-)

I will keep you posted in these next few weeks. I can update the blog from my mobile so keep checking it. Please keep our little man in your thoughts and send positive vibes. It's really not going to be a nice experience for him but we have to be strong for him and keep looking forward.

Here's a few photo's

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Updating by text message - testing testing!
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UPDATE

Hi everyone!
Well Thomas has his cardiac catheter on 12th November. All went ok although it was awful for us handing him over and when he woke up he was really cross :-( We ended up staying in over night as he spiked a temperature in the afternoon but it was something and nothing and so came home the next morning.

Since then we have received a letter from BCH to say that 'Thomas is on Mr Jones' routine waiting list for surgery in the next 3-4 months'. This is good news - no time is ever going to be a good time for putting your little boy through open heart surgery but by March/April time hopefully the weather will be a little better, he will have had his birthday and hopefully we will be settled in our new house.

It was Thomas' first Nativity at school yesterday. They all put on a brilliant show. Thomas was a soldier and had to count out loud by himself. He did great! We were very proud of him.

Here's a short video of him in action....

Cardiac Catheter

Thomas' cardiac catheter is this Friday. We've been to the pre-admission clinic today where we completed lots of paperwork and went through what is going to happen. We were expecting that Thomas would have an echo, an ECG and a chest x-ray today but all the consultant requested was the usual observations (height, weight, sats, bp) and a blood test. We were still there for the best part of 3.5 hours as we also visited the ward and Thomas went in the play room. A cardiac catheter is usually a minimum of one night stay in hospital but as long as his blood results are ok we will not have to go in until the morning of the cath. It'll be an early start as we've got to report to the ward for 8am and there is always a chance that he might have to stay after he's had the cath done but we are hopeful Thomas will be in and out in the day.

Thomas seems fairly ok with it all thus far. We've been doing some hospital play at home with some real medical bits of equipment and we've been looking at some books to help him understand how his heart is special. It feels quite strange going back in hospital but I think it will be good to help prepare ourselves for his next operation The Fontan. As things stand this is scheduled for next spring but the catheter results are key.

Thomas has settled in really well at school. He's still happy to go in the mornings and
seems to be enjoying the learning. We've had our first parents evening and his teachers are really pleased with how he's settled. As long as he's happy and enjoying it that is all that matters. He had his first school trip the other week to Coombe Abbey to see the changes of Autumn. I went along as a parent helper as Thomas was in a buggy - we had to borrow a big buggy (off Thomas' heart friend Charlie) as Thomas was initially rejected but we have since been granted one by the wheelchair service so he now has his own.

Samuel is lovely, still dotes on his brother (despite the wrestles) and has taken his first step, only one so far but he's getting there.

I'll update again after Friday.

BIG school!

Thomas started school on Wednesday. He was very excited he couldn't wait to get his uniform on and get there. He skipped in and was all smiles when I picked him up a couple of hours later. I asked him how he'd got on and he said 'Well, that was quick am I staying longer tomorrow?'. The last two mornings have gone equally as well so all in all a very good start. He starts full time next Thursday so he has a few more morning sessions before then. We are so chuffed for him - it is so great that he is starting school just like all the others and he looks very smart in his uniform. We're very proud of big school boy :-)


Samuel had his first birthday on 26th August. I can't believe where this last year has gone. We had a little party at lunchtime and a family tea later on. He has started to pull himself up the furniture now and is generally enjoying seeing the world at a different level.


P.s No word from the hospital as yet as to when Thomas' cardiac catheter will be. I keep expecting that brown envelope to arrive on the mat - I guess we will hear soon.

Heart check up

Hi all

We've been to Birmingham today for Thomas' heart check up. His height and weight were spot on and his sats 82 (fine for Thomas). They did an Echo and are very happy with him. As expected they discussed the timing of his next operation (the Fontan). Basically they have no waiting lists and as Thomas is now 4.5yrs 'we could get it all done and dusted by Autumn' GULP! Equally because he is doing well we have the 'luxury' of time so we plumped for the cardiac catheter (the exploratory procedure) in October/November with a view to the operation next Spring. We've always known it was coming but it is still hard. You would never choose to put your child through it but we know that it needs to happen so Thomas can keep up better with his peers.

They did an exercise tolerance test with him whereby they checked his sats at the top of the stairs, he then had to walk down two flights and back up two flights and then had sats checked again. His sats peaked at the top at 87 (yee-har!) and dropped to 70 after exercise. They said that 70 wasn't bad at all for Thomas. It was also interesting hearing the Dr describe children like Thomas at school. He said you will see them running around in the playground, the difference being they will run then stop (to get their breath back) run, stop, run, stop. Whereas the other children have so much more endurance. This is exactly what Thomas is like, he does everything his friends do now just at his pace. This 3rd op will give him much more energy and he will be able to cope better with exercise. We know this has to be better for him.

Thomas just wants to get his heart fixed so he can run faster and get a big present. Oh to be so carefree eh!

He starts school on 8th September - it's amazing to think he's going to school. I'm so happy for him but equally I'm a bit nervous. He is definitely ready for it and seems to be looking forward to it. We've been into see his teachers and go through all the medical side of things. They gave us confidence they will do right by him, the main thing is for us to keep communicating with each other. It's a big learning curve for all of us and it will take a bit of time for us all to get used to things but it's a fantastic milestone!

I'll try and keep the blog updated a bit more often over these next few months. We've had such a busy year enjoying ourselves I've neglected my blog duties ;-) Thomas & Daddy are going camping this weekend (weather permitting) at Wicksteed Park. We're all going for the day with our friends (The Duffs) then the big boys are staying over under canvas, while the Mummy's and the young ones head home and then regroup on Sunday morning.

The next Thursday is Samuel's first birthday, I really cannot believe he is doing to be one. He's such a little treasure, he's crawling around everywhere and spends most of his time trying to get at Thomas' toys. It's so lovely to see them together though.

We're off to Cornwall for the last week in August. We thought we'd get another holiday in before Thomas starts school. So no doubt Rick Steins fish and chips will be on the menu and hopefully a bit of sand castle building as well. Happy times!

I've added a couple of photos above - for some reason I couldn't get them to appear down here - must be out of practice ;-)

A mega update....

Hi everyone
Life has been pretty manic these last few months so apologies for the lack of news. Thomas has been on form - a little too on form at times - and is still very much into his little brother. Samuel has settled in nicely and is now so much more aware. He giggles, hold things, has found his feet and is generally very interested in the world around him but his little face absolutely lights up when his big brother is around.

Christmas was great, busy as usual, but good fun. We took Thomas to see Santa on the Severn Valley Railway which was really nice plus many other Christmas parties and festive gatherings.

Thomas had a heart check up after Christmas, the usual 6 monthly one, but we were anxious about it because Thomas is coming up 4yrs old and is getting closer to the time of the next operation. They scanned him and are very happy with his heart which is brilliant news. His sats were 84, which again is spot on for Thomas, but as predicted they did start the conversation about the Fontan (the 3rd open heart operation). His consultant said realistically we are looking at the next 12-18 months. It's during these next couple of years he thinks we will really start to notice the difference between Thomas' level of activity and his friends. He's starting school in September and they like to get the Fontan done in Reception or Year 1 'before the real work starts'. Anyway nothing is happening for the next 6 months, he said when we go back in the summer they will do some exercise tolerance tests with Thomas to see how puffed he gets and take it from there. The next thing will be a Cardiac Catheter which is generally a one/two night stay in hospital where they go up through the groin to check the pressures in the heart and generally have a good look at it from an internal perspective. So, the good news is he's doing well and they are happy with him. We've always known about the 3rd op but it doesn't make it any easier. At least we have some time to get used to the idea (if you ever do!).

Samuel has had Bronciolitis so we were in Walsgrave hospital with him a week or so ago as he wasn't feeding. It's taken a little while to shift but he seems to be back to normal now pretty much. He was still very smiley throughout and the doctors and nurses kept saying he looked too well to be in there (plus they thought he was really cute! ;-) Thankfully he avoided having an NG tube and I syringe fed him small amounts of milk until he could take it better himself by the bottle.

It's Thomas' 4th birthday on 2nd Feb - I can't believe our little rascal is going to be 4 years old. We're off to Center Parcs on 1st Feb so we'll celebrate his birthday there but he's having a party next Sunday before we go.

Here's some photo's of the last few months - I'll report back after his birthday and Center Parcs.