RIBS

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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Bye bye fat free diet! Boiled egg and soldiers have never tasted so good :-) --
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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....

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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Just having fun at the park in town in the sun x--
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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

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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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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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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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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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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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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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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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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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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Our cheeky rascal in the cafe today. He's still got his cold just sneezin and a runny nose.--
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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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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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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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Playing outside in the sunshine today.--
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Here's an excited Thomas opening his post.--
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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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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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