Thomas' News

School Run

2011-07-21T13:14:00.002+01:00

There was a Great School Run at Thomas' school on Friday. He was very excited to be able to join in and show off his new running skills. I was very nervous and on edge but his teacher said she would accompany him round. Well, he ran a bit and he walked even more and managed to complete SIX laps, that's SIX laps of the school perimeter! He would never have been able to walk round once without getting out of breath before his op. I felt pretty emotional watching him go round - to think that on that day 6 weeks ago he was still in hospital, it was great to see how far he's really come.

They have an assembly to celebrate the end of their first year at school so yesterday was the Graduation Assembly. All the kids took turns to go on stage and shake the Headmaster's hand while the teacher said a few words about them. I can't really remember what exactly they said about Thomas because after I heard the words 'We are so proud of how brave and mature he's been about his recent heart surgery' I was pretty much a wreck. I'm SO pleased he's managed to get back to school and join in on all the fun end of term things with his little mates.

Term ends tomorrow and we're off to Legoland on Saturday morning for the weekend with some friends. We're all very much looking forward to it. Then we've got a few activities planned next week before we head off to Cornwall for a well deserved break. Lets hope the sun shines on us as we could all do with a bit of warmth to help us relax and the beach is sooooo much better in the sunshine.

I'll post some photo's of the run and the assembly as soon as.

Good result at BCH!!

2011-07-12T13:52:00.002+01:00

Well we went back to BCH yesterday with much trepidation, hoping beyond hope that the fluid had finally gone. The nurse always does the usual obs (sats, weight etc) Thomas is now slightly heavier than when he went in for his operation. His sats started at 90 but then settled at 88, Paul and I felt sick and were sure that the fluid must still be there. We then saw Dr Chikermane (Thomas' consultant) he asked us how Thomas had been and we explained that he'd been doing very well but we had just got an 88 sats reading. He was very relaxed and said they group anything from about 87/88-92 together and had we hung around a bit longer we would have probably got a reading of 90 ish. That's the group they expect Thomas to be in at this stage and more importantly it's where they want him to be. He said they'd be more concerned if his sats were 98 and he was listless and tired. Thomas had a fenestrated fontan operation so a small hole was left in the gortex tube through to the heart to act as a pressure valve. This helps protect the lungs but does mean that the children are still slightly cyanosed. He said the hole might well close over within the next couple of years or so as things settle down and as a result his sats will increase a little bit. He also said that Thomas will be able to achieve more and more once his body has built up stamina. This is exactly what we thought but it's always good to hear it from them.

He then did his echo which showed NO fluid :-) woop woop woop! He said the echo looked 'very good' and he was 'very happy' with him. Phew! What a relief! He has reduced some of his medication and doesn't want to see him until October. Yes, OCTOBER. How great is that!

It's only now that we actually feel like we're actually coming out of this whole experience. It's been really really hard. Harder than we ever imagined and in a different way too but the main thing is Thomas is doing well and whilst we know hospital visits are always going to feature in our lives it feels wonderful that we have a few months off. Well done Thomas!

Full time school

2011-07-09T14:55:00.003+01:00

Thomas started back to school full time on Thursday. He said he didn't really want to go back full time as he's enjoyed coming home and playing in the new sandpit and paddling pool during the afternoons but he was fine when it came to it.

We went to our local hospital again yesterday for Thomas' INR check. It was 1.6 despite them having increased his warfarin dose. His diet has changed though I suppose so that might have something to do with it, needless to say they've increased his dose again and we're due back next Friday. We're due back at BCH on Monday morning too. Here's hoping that pesky fluid has finally gone and done one this time.

We're slowly getting back to some sort of normality although it's taking a while. I guess the last few months have been anything but normal. The main thing is our little rascal is doing well and looks really great :-)

RIBS

2011-06-30T22:28:00.003+01:00

Thomas has been waiting for this day for weeks. Here he is tucking into his favourite meal of ribs, chips and corn on the cob at the Harvester. It was SO wonderful to see him polish them all off, I've not seen him enjoy his food this much in weeks. I'm so pleased he's finished his MCT diet. He did so well on it, he was so grown up about it, no tears or tantrums just got on with it, albeit pretty reluctantly at times. He's done it now and I'm very proud of him. Bring on the treats :-)

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2011-06-30T13:16:00.001+01:00

Bye bye fat free diet! Boiled egg and soldiers have never tasted so good :-) --
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2011-06-27T22:04:00.001+01:00

Thomas started back to school today on a phased return of mornings for the time being. After initially saying he didn't want to go he was soon skipping out of the door not wanting to be late. He walked/scooted all the way there which is a first :-) When he got to the playground lots of his little mates came running over to greet him and after he'd gone in I peeked through the classroom window to see him surrounded by his friends and proudly showing off his scar. It was a special moment - I felt very proud of him. It still feels surreal that we're actually on the other side of it. I'm still not sure it's sunk in properly. Another big milestone for our boy today - what an achievement :-) --
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Bit of relief....

2011-06-24T21:57:00.003+01:00

We went to our local hospital again this morning for Thomas' INR check which was a bit low at 1.7 (it's supposed to be between 2-3) that said I'd rather it be 0.3 under than 0,3 over but that's just my preference. Anyway they've increased his dosage a bit for this week so we shall go back next Friday and see where it's at.

We then headed to BCH for another check. His sats were sitting comfortably at 90 which is always a good start. The echo still showed a bit of residual fluid albeit it less than last week. The doc was all set for us to come back in a week or so but then we saw another doctor who'd done Thomas' cardiac catheter procedure and who we saw alot while we were in hospital. He took a look at the echo and was really relaxed about it, it's a very small amount and not compromising his lung or anywhere near his heart. He suggested Thomas have a chest xray to get a different view and because apparently fluid can appear more on echo and they would call us later. They called after we got home and said the chest xray was 'very good', we don't have to go back til our planned appointment on 11th July, the MCT diet can stop on Wednesday and they've reduced his diuretics. Oh and he can go back to school. This is much better news and feels like a weight has been lifted. We feel we can start to move on a bit now, it will do us all the world of good to get a bit of routine back and a bit of normality.

Here's Thomas' response to today's news.....

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2011-06-20T11:54:00.001+01:00

Just having fun at the park in town in the sun x--
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2011-06-17T21:29:00.001+01:00

We went to our local hospital this mornin for Thomas' INR test which was 1.9. Not bad considering he's been put on antibiotics this wk as a swab they took of his drain site showed a minor infection. We then headed to BCH for a check up and the echo showed there's still a bit of fluid :-( It's not alot so they've increased his diuretics for the wk and we are due back on friday. We're a bit fed up as we were really hoping for the all clear. That said Thomas has been doing well this wk. He's got a bit of colour back and looks well. We still think there's scope for him to get better tho and are hopeful wen this fluid is finally sorted he'll be flying. --
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Post op check up

2011-06-10T20:54:00.003+01:00

It is SO good to be home. We've not done very much these last few days but it's still been pretty full on. Both boys seem pretty excited to see each another and Thomas seems really happy to be home. We ventured out for the first time yesterday to the library and then the barbers so they're both looking much smarter now. It's the first time we've been into town without the buggy board for Thomas. We took it easy and he did say he was tired at one point and said he was puffed once BUT he walked farther than he's ever done before and he's not totally recovered yet. He still has the back end of the cold and his body needs to repair itself after the surgery but he's doing great and it's so exciting to see him do things he couldn't do before.

We headed back to BCH today for Thomas' check up. I was nervous but it went well. The echo showed no fluid while he was lying down and only a teeny tiny bit when he was sitting up. The doc was happy and not worried. We're going back next Friday for another check and he's already requested an appointment for 6 weeks so he's not expecting anything different next week. Thomas' sats were 89/90 - the doc said they are likely to go up a bit more when he's fully healed. His INR was 2.8 and he his weight was back up a bit. The doc said his fenestration was working well and 'he has a perfect left ventricle', this is always really good to hear when this one pumping chamber is doing the job of two. I don't think we could have asked for more from the appointment considering where we were this time last week.

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2011-06-06T19:36:00.001+01:00

Thomas has had an echo this morning and it is CLEAR! We can go home :-) Woop woop woop woop. I've got tears of joy i can hardly believe it. They reckon the 100mls ish of fluid he's been getting for the last wk or so was caused by the drain being in. Never mind we're free and it feels flipping fantastic! :-) Our amazing boy has made us so proud. His attitude to being in hospital has been so positive. He's one very precious amazing little boy! X
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2011-06-06T09:08:00.001+01:00

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2011-06-06T01:44:00.003+01:00

Thomas' obs were fine all nite and his chest xray this mornin was clear :-) He's been gr8 in himself and even more mobile now he hasn't got dwain with him. The docs on the mornin round said if all stays as it is we might be able to go home tomorro afternoon and come back Friday for a check up :-) This would be absolutely wonderful. We're trying not to get too ahead of ourselves but they mentioned it not us. Thomas will hav either another xray or echo tomorro morning and we'll go from there. I hardly dare think abt it. Please keep ur positive thoughts coming.
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2011-06-06T01:44:00.001+01:00

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2011-06-05T21:33:00.001+01:00

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2011-06-05T21:32:00.001+01:00

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2011-06-04T23:07:00.001+01:00

Thomas' drain came out this mornin wen he was in the playground. Paul acted quickly and got him straight back 2the ward. He said he didn't cry initially but then got upset. He's had an xray and all is ok. They're doing another one tomorro 2see if any fluid has collected. If so they will hav to put another drain in. Doc said our lungs produce abt 20mls of fluid an hour but 18/19 mls get re absorbed. Sometimes wen drains are in for a long time it comes out the drain cos that's the easiest route of exit. Plus the drain itself will irritate and produce a bit of fluid cos it's a foreign body. We hav to hope and pray now the drain has gone Thomas' lungs finally start absorbing all of the fluid. It will feel like a real kick in the teeth if he has to hav one back in now. Please keep everything crossed for our little boy.
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2011-06-04T22:51:00.001+01:00

Thomas' drain came out this mornin wen he was in the playground. Paul acted quickly and got him straight back to the ward. He said he didn't cry initially but then got upset. He's had an xray and all is ok. They're doing another one tomorro to see if any fluid has collected. If so they will hav to put another drain in. Doc said our lungs produce abt 20mls of fluid an hour but 18/19 mls get re absorbed. Sometimes wen drains are in for a long time it comes out the drain cos that's the easiest route of exit. Plus the drain itself will irritate and produce a bit of fluid cos it's a foreign body. We hav to hope and pray now the drain has gone Thomas' lungs finally start absorbing all of the fluid. It will feel like a real kick in the teeth if he has to hav one back in now. Please keep everything crossed for our little boy.
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2011-06-03T22:28:00.001+01:00

Our cheeky rascal in the cafe today. He's still got his cold just sneezin and a runny nose.--
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2011-06-03T22:26:00.001+01:00

Thomas found £5 today in the playground and spent it in the hospital shop on two more soft toys. Here he is just outside the hospital with his new friends.--
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2011-06-03T22:22:00.001+01:00

Here's Thomas syringe painting with Nana. There was an event on in the playcenter this afternoon Thomas enjoyed being a doctor and doing all the things he's had done to him. He's been gr8 today running down the corridor with his trolley. He spent most of the afternoon off the ward. We enjoyed a lollipop in the cafe together this afternoon - it felt gr8 - we could hav been anywhere. Dwain is currently on 90mls with a bit in the tube. Thomas is coping with being in hospital much better than me at the minute. He's our little star!--
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2011-06-02T22:26:00.000+01:00

We've been making animal glasses today. This was one of the presents he got in the post this mornin. Paul has been in london today so he went home last nite and came back tonite afta a full day. I missed him. Thankfully uncle Si dropped in at lunchtime so i could hav a break for an hour. Being in hospital saps the life out of u. U need a break but we don't ever leave T on his own so it's a bit tricky wen there's only one of u. The dreaded drain stayed at 80mls yest but is at 100mls so far today. I was SO disappointed wen it went from 30mls to 100mls in the space of the afternoon. Thomas is fine but now has a cold, been sneezin and his nose is running. He's happy tho and said 'i quite like it in hospital mummy bcos i get LOTS of presents'. --
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2011-06-02T22:17:00.001+01:00

Playing outside in the sunshine today.--
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2011-06-02T08:58:00.001+01:00

Here's an excited Thomas opening his post.--
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2011-06-02T08:53:00.001+01:00

My text wouldn't send last nite so this is yesterdays report. We had a bad nite and our room mate ended up being evicted at 3am. His mum had been staying then decided on mon not too so we were left to sort him out. Not on. Anyway T had a good day but was tired. His drain ended up at 120mls. His teachers came to visit which was lovely then we managed to get outside in the fresh air and in the play center on the Wii. I went home to give Samuel his tea and put him to bed which again was gr8. They've changed Thomas' catropril medicine - the one they started him on last wk - to enalapril which is only twice daily. Surely Dwain has got to dry up soon . . .
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2011-06-01T23:49:00.001+01:00

We had quite an eventful night last nite which resulted in our room mate being evicted and placed back on the open ward. After staying 4 a few nites his mum decided on Monday not to stay and subsequently we've had 2very disrupted nites and little sleep. Anyway it's sorted now. We are expecting a new room mate tomorro so we're making the most of being in the room by ourselves while it lasts. Thomas has had a visit from his teachers this morning which was really nice. He's also been playing outside and in the play center as well. It always helps to get off the ward. He's been tired due 2the interrupted sleep but has been ok. The catropril medicine he started on last wk has been changed to Enalapril which does the same job but only twice daily which is better. Thomas was discussed at this mornings big weekly meeting and all the medics are happy with everything and are confident the drain will stop. Dwain the drain is currently on 80mls.
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2011-05-31T23:20:00.001+01:00

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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2011-05-30T23:17:00.001+01:00

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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2011-05-29T23:23:00.000+01:00

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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2011-05-28T23:50:00.001+01:00

An action shot in the outside playarea.--
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2011-05-28T23:49:00.001+01:00

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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2011-05-27T23:35:00.001+01:00

Having fun with the latex gloves!--
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2011-05-27T23:33:00.001+01:00

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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2011-05-26T23:38:00.001+01:00

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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2011-05-26T00:17:00.001+01:00

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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2011-05-24T23:41:00.001+01:00

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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2011-05-24T12:35:00.001+01:00

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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2011-05-23T23:14:00.001+01:00

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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2011-05-23T17:09:00.001+01:00

Here he is eating his spag bol xxx--
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2011-05-22T23:09:00.001+01:00

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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2011-05-21T22:41:00.001+01:00

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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2011-05-20T23:31:00.001+01:00

Playing with lego on his bed. --
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2011-05-20T23:30:00.001+01:00

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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2011-05-20T23:28:00.001+01:00

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2011-05-19T23:35:00.001+01:00

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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2011-05-18T23:38:00.001+01:00

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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2011-05-17T23:26:00.001+01:00

Making finger puppets while pretending to be a dog ;-)--
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2011-05-17T23:25:00.001+01:00

On the look out for pirates!--
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2011-05-17T23:24:00.000+01:00

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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2011-05-16T23:10:00.001+01:00

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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2011-05-15T19:34:00.000+01:00

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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2011-05-14T22:42:00.002+01:00

Two cheeky chappies x--
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2011-05-14T22:42:00.001+01:00

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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2011-05-14T22:40:00.001+01:00

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2011-05-13T22:49:00.001+01:00

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

2011-05-13T10:47:00.000+01:00

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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2011-05-13T09:59:00.000+01:00

Testing. . . .Testing. Yesterday's messages and pics hav disappeared so just sending a test.
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2011-05-13T09:24:00.000+01:00

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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2011-05-12T19:48:00.000+01:00

Pancakes anybody?--
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2011-05-12T19:47:00.000+01:00

On his way to playroom.--
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2011-05-12T19:45:00.000+01:00

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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2011-05-11T23:00:00.000+01:00

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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2011-05-10T16:58:00.001+01:00

Concentrating on Super Mario Bros :-)--
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2011-05-10T16:45:00.001+01:00

Showing Alex his new toy :-)--
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2011-05-10T16:44:00.001+01:00

I'm off to the playroom. . . slowly but surely on the way there but more confident on the way back.--
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2011-05-10T16:42:00.001+01:00

My two gorgeous boys x--
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2011-05-10T16:41:00.001+01:00

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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2011-05-09T09:15:00.001+01:00

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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2011-05-08T16:39:00.001+01:00

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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2011-05-08T13:27:00.001+01:00

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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2011-05-07T14:08:00.001+01:00

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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2011-05-07T12:08:00.001+01:00

With his balloons from 'funny Gen' :-) x--
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2011-05-07T10:11:00.001+01:00

Out of bed in the chair. More comfy today x--
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2011-05-07T09:46:00.001+01:00

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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2011-05-06T20:32:00.001+01:00

Snoozin with Jez with a little bit of colour in his cheeks x--
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2011-05-06T10:52:00.001+01:00

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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2011-05-06T10:33:00.001+01:00

Out of bed to be weighed bit sore and painful :-( but doing really well. X--
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2011-05-05T17:16:00.001+01:00

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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2011-05-05T15:18:00.001+01:00

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....

2011-05-01T21:41:00.003+01:00

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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2011-04-28T07:25:00.001+01:00

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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2011-04-27T18:51:00.001+01:00

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...

2011-04-27T09:24:00.003+01:00

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....

2011-04-26T20:23:00.003+01:00

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

2011-04-25T09:42:00.006+01:00

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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2011-04-13T16:55:00.001+01:00

Updating by text message - testing testing!
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2011-04-13T15:33:00.003+01:00

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2011-04-13T15:33:00.001+01:00

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2011-04-13T14:59:00.001+01:00

Testing from my mobile
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2011-04-13T14:50:00.001+01:00

Just testing whether I can update the blog via emai

UPDATE

2010-12-09T12:15:00.002Z

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

2010-11-09T19:01:00.003Z

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!

2010-09-10T12:44:00.006+01:00

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

2010-08-16T21:37:00.005+01:00

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....

2010-01-24T12:47:00.004Z

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.

Samuel James Hooks

2009-09-07T18:25:00.005+01:00

Thomas is a BIG brother!!

Samuel James was born on 26th August at 2.03pm weighing 7lb 1oz. He came 5 days early - obviously doesn't take after his Mum - but it all went really well and we are totally made up with our boys :-) Thomas is the doting big brother and seemed to instantly accept Samuel, he couldn't wait to get to the hospital and meet him. He keeps kissing him and wanting to cuddle him which is really lovely. He's been a bit of a handful for us at times, which is obviously a reaction and only to be accepted, but he's besotted with his little bro which is the main thing.

Here's a slideshow of a few pics

28th July 2009

2009-07-28T20:27:00.005+01:00

Hello again

Thomas' heart outpatients appointment went well on 25th June. His sats were 82 (that's fine for Thomas) and after a thorough heart scan the registrar said his heart was 'working well'. We didn't ask any questions this time, we basically just scarpered out of there when he said he'd see us again in 6 months. We didn't want to prompt any discussion about the next stage. Thomas is reaching the age where they could start talking about the next operation and start the ball rolling i.e put him on the cardiac catheter list and we really don't to face this over the next 6 months with the new baby coming along. It would be different if Thomas was struggling in anyway but he's doing very well and having such a lovely time so leave us be for the time being please.

The next day I had another scan to check on the baby's heart and that all went very well too so it was a really good couple of days for us :-) Also 26th June was my Mum's 65th birthday and we'd arranged a surprise BBQ for her at my brothers. This all went off really well (despite a monsoon like downpour in the afternoon) and we even managed to keep it a surprise from her - for anybody who knows my Mum will realise this is no mean feat :-)

Thomas has finished his first term at 'big boy pre-school' for the summer holidays. He's back there for 2 sessions a week in September. He seems to really enjoy it, he's made some new friends and is always coming home with some crafty thing he's made.

I've now finished work - I've taken some holiday before my maternity leave which officially starts on my due date 31st August. So today we've been playing cricket & golf in the garden and playing in the sandpit - this beats work any day!!

Last Friday we went to West Midlands Safari park and met up with Thomas' heart friend Charlie and his mum. We had a brilliant day and despite the hideous weather forecast it was actually really pleasant and sunny for the most of the day. The boys had a ball and the next morning Thomas said ' Mummy I really like Charlie and he's got a special heart like me' awwwwww.....

We've been very busy at home decorating and reorganising the bedrooms in readiness for our new baby. I'm pleased to say the nursery is now ready and the new office/spare room is nearly there. Thomas has been helping (in his own way) he likes to be involved in everything, we've found the best approach is to let him have a go and then he often gets bored and goes off to play.

Daddy's fathers day present was a book called 'Daddy's little boy' in it there is a boy called Tom who does lots of great stuff with his Daddy. One of things they get up to is making a castle so Thomas wanted to do the same. I've added some photo's of it for you - it's been a bit of a project but it's all finished now and the boys are very proud of their creation (especially Daddy ;-).

We've not that much planned over the next few weeks, the baby is due in 5 weeks time so I want to spend as much quality time with my little man before his new sibling arrives. I still cannot quite believe we will have a newborn arriving soon. Thomas is still excited about it - he's been coming to my antenatal appointments and listening to the baby's heart beat. We'll see if he still feels the same when it arrives!

I've added a slide show below of some photo's taken over the last few weeks.

A mega update!!

2009-06-10T08:51:00.004+01:00

It's a ridiculous amount of time since I last updated you about what Thomas has been up to - we've been really busy and having lots of fun.

The first major news (well, it's old news now) is that Thomas is having a new baby brother/sister due at the end of August :-) So far he is very much into the idea of his new sibling, he keeps kissing my tummy and asking 'when's it coming out Mummy?'. Lets hope he shows the same enthusiasm when it arrives and realises it's here to stay! We've had some extra scans and another one due on 26th June but so far this baby is looking like it has a heathly heart, which you can probably imagine is a HUGE relief for us.

Thomas started pre-school for two sessions a week after Easter. It's the one attached to the school that he will hopefully go to. We call it 'Big boy pre-school' and he's settled in really well and seems to enjoy it. It's another milestone for our little boy who is really growing up - he suddenly decided a few weeks back that he didn't want to wear his night time nappy anymore and so that was it, he hasn't since and done really well with it!

He's more into Tom & Jerry and Power Rangers at the minute with Lazy Town and Sportacus taking more of a back seat. He's still very much into cars and balls and loves playing bat and ball.

We went on holiday to Wales at the beginning of May - the weather was OK and we managed to get to the beach every other day. Thomas loves the beach. He loves looking in rock pools, demolishing sand castles and playing football on the beach. We also went on a steam railway and to an Animalarium where Thomas held a snake!!!

We've just got back from a week in Ibiza - last chance for a holiday abroad before number 2 arrives! We've had a great week, the weather was glorious, beautiful sun all week. Thomas was dipping in and out of the pool, the beach was a 2 minute walk away and there was 2 cartoon characters in the hotel called Dizzy (dolphin) and Shades (shark) - which were a big hit with Thomas. There was a children's disco on every evening and he really enjoyed a good boogie to the Dizzy & Shades Shakedown. He's a bit of a mover our boy! :-)

Other stuff he's been up to over the last few months is a visit to the zoo, having picnics in parks (galore) and going to a couple of children's farms. We also had a day trip to Skeggy over the bank holiday weekend which was a really good day out.

Thomas has had a new 'football' bedroom which he's very pleased about. We're changing all the bedrooms around in anticipation of the new baby coming so Thomas has now got a big boys themed room. It was so funny when he was looking through the different designs for his room, dinosaurs, diggers, space, animals, racing cars etc etc but he just kept going back to the football one. He certainly knows what he wants!

Heartwise Thomas is doing well (touch wood, fingers crossed and all that) we are due back in Birmingham for a check up on 25th June so hopefully that will go well. He certainly seems full of life and energy. He definitely can't walk as far his little friends and does get puffed but he is doing really, really well. Looooooong may it continue!!!

Thomas' 3rd Birthday

2009-02-06T09:15:00.004Z

It was Thomas' 3rd birthday on Monday - can you believe he is three already??

He's had a great time, he had a party on Sunday afternoon at a local sports centre. There was the biggest bouncy castle you've ever seen plus loads of soft play items and bats and balls. It was really good, and great to see him will all his little friends enjoying himself. There was about 26 kiddies in total but there was no catastrophes or dramas and everyone seemed to have a great time. Thomas' little heart friend Charlie travelled all the way from Cardiff to be there - how lovely is that.

Every birthday is such a milestone for us when you think back to where we were when we first learnt about Thomas' heart. It's easy to forget when you see him carrying on like a typical a 3year old but we never forget how precious he is. He does get breathless and he can't walk as far as his mates without getting tired (esp in the cold weather) but he's done amazingly well in these three years we just hope this is a taster for how the future will be.

Gushing proud Mummy moment over........... :-)

On his birthday itself Thomas woke up to a winter wonderland he went to the window and said 'Mummy, it's snowing because it's my birthday'. It did make his birthday even more magical as after he'd finally opened all of his presents (which took 4 hours!!!) we went outside to build a snowman and play in the snow. It was great!!!

Grandma and Grandad spent the day with us and brought some more presents and then we had our tea out at a local carvery and Uncle Paul joined us there. All in all the little man seemed to have a great day.

The next morning he woke up and said 'who's birthday is it today Mummy'?

Here's a few photo's I'll do a slide show later.......

P.s I must tell you this little story - a couple of weeks ago we had a power cut in the middle of the night which ordinarily you would think would go unnoticed but not in our house as Thomas has a night light and the bathroom light is left on to shine in his room. SO, he woke up in the small hours really upset saying 'Mummy, Daddy my eyes aren't working'....... awwwww

Christmas 2008 & Center Parcs Jan 2009

2009-01-30T17:53:00.006Z

Well, it's been a while since my last update......time flies when you're having fun!

Thomas had his outpatients appointment in mid Dec and all went well. They were pleased with his heart function, his growth and sats so we can breathe again for another 6 months. He was such a good boy while they scanned his heart, lying very still and doing just as the registrar wanted.

Then came Christmas - what a great time we had. Thomas was far more aware this year, he knew it was Christmas time and loved all the lights on the houses and all the festivities. On Christmas morning itself he came downstairs oblivious and casually walked into the lounge and on seeing the mountain of presents he said 'WOW look at all my presents, Santa bring all my presents to my home' ..........priceless!

We've just had a mid week break in Center Parcs, it was great. It was nice to have a few days away in the forrest. It's always pretty relaxing eventhough there's loads going on, we did swimming, biking, bowling, soft play and all sorts. Here's some photo's of our waterbaby.......

In other news Thomas has been to the cinema for the first time. He enjoyed Madagascar 2 just after Christmas and for a first time cinema goer he did really well. It was a good film actually I really enjoyed it myself :-)

He's still very much into playing with his cars, he's a big fan of his work bench (that he had for Christmas) and he's seriously into his marbles. Telly wise he's into Lazy Town (he thinks he is Sportacus), Peppa Pig and The Backyardigans or as Thomas calls it The Backcardigans :-)

We've got a full weekend ahead of us with Thomas' birthday party on Sunday and the big day itself on Monday. I can't quite believe my little rascal is going to be three on Monday. I'll post again soon with photo's of the birthday boy!!!