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.
Thursday, July 21, 2011
Tuesday, July 12, 2011
Good result at BCH!!
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!
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!
Saturday, July 09, 2011
Full time school
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 :-)
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 :-)
Thursday, June 30, 2011
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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Monday, June 27, 2011
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Friday, June 24, 2011
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.....
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.....
Monday, June 20, 2011
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