Stage 3 Cardiac Surgery & Beyond
Read about Bethan’s progress below. This page will be updated regularly.
Because of the level of interventions Beth has had into her veins and arteries, then the 2 main veins at the top of her legs (which carry the blue blood back to the heart) are both blocked. We may have problems with the legs growing unevenly, so again something to watch out for in the future.
Overall it was a really good visit and as we left the hospital, a sort of closing volume on Beth’s life to date. All the staged operations are complete, a very difficult first 12 months but a lot of optimism for the future. I commented to Mandy that perhaps our Autumn car boot sale may include a pram for sale - clean but well used!
Mandy did ask about ‘what’s next’ and we got an answer that we both expected, but parents will always look for a more definitive answer than they can give. Dr Tariq was very honest and balanced with us in saying that nobody can tell. Oldest surviving patients through these procedures in the UK are in their early 20’s and generally are doing well. Of course, none of them are athletes or football players but have a quality of life that is close to normal. Sometimes patients need the hospital and further interventions a lot more than others. Every hypoplast is different.
It was nice at the end of this meeting because Dr Tariq had been involved with Bethan from the start, and he reflected with us about the dark days in PICU in the first few months and how poorly she was. He said it’s really nice for all the medical staff to see Beth as she is now, as not every patient has a happy ending.
We also had a visit to Worcester Hospital in the morning for her blood level (INR) check. This has been a regular, twice-weekly visit since coming out of hospital and it has fluctuated (ideal is between 2 and 3). Last week it was 1.7; yesterday it was 2.4. We have been told that it can take 8 or 9 months to settle down (at each check the blood people adjust the number of warfrin tablets to try to get the balance). I guess that we’ll need to get used to the A44 road to Worcester over the next few months!
Also this week Beth went into school for a few hours as it was ‘move up’ day where the children meet their new class teacher. She enjoyed that although she came back and slept for a couple of hours after. She’ll be back to school in September.
21st June 2009 11.00am: Beth has quickly adapted to home ... when we got home last Sunday, the first she did was hug the telly and said "I've missed you!".
She's fine in herself, maintains a good face colour and hasn't been out of breath, although she hasn't exerted herself yet. She's helped water the garden (she says "Dad, I'll be Sam and you be Elvis" as I have to take a support role with holding the hose). Her favourite word at moment (apart from 'why') is 'careful' whenever we pick her up or hug her, and points to her chest. Me thinks there is a certain amount of 'milking it' going on.
Had lots of issues this week in setting up her I.N.R. Blood clotting tests locally (she has to have this carefully monitored as the Warfrin drug deliberately thins her blood to lessen the chance of a clot developing in her weakened artery system. If the blood thins too much she might be in trouble if she falls over and bleeds, or has an internal injuries sustained) - a catalogue of errors/miscommunications and people not doing what they said they would / should. Her level was only 1.5 on Wednesday when checked at Birmingham (it should be 2-3). They released us saying it's acceptable, yet Worcester Hospital said on Friday that with that level we should have stopped in until it improved! Having said this, Worcester also said that the test they do at Birmingham is not that accurate, and their way is better! Got to go back to Worcester on Monday for next blood check.
Mandy put in a repeat prescription for the new regime of drugs, to our local surgery, as the hospital only gave us minimum supplies (understandably). Our G.P., Dr Jones rang up a few hours later surprised to receive it and that nobody had informed him that Beth was out - it appears the communication through the system is rather slow and a lesson for anyone leaving hospital not to rely on the NHS internal communication system to kick in, especially as the drugs are the lifeline.
14th June 9.00pm: Bethan is home at last! 2 days ago the Sister said that there had been a meeting and the plan was to release Bethan today. It all depended on whether the surgeons were happy with the wound when they changed the dressing . They were and armed with 5 different medicines we got home at 4pm.
She is in very good spirits (and has developed an even more infectious laugh than before - don't think that was part of the surgical procedure). She is certainly pinker than ever, and she seems to have lost the chesty cough she had. Time will tell about her energy levels as she builds up her strength.
She is still on antibiotics for the wound infection, and a completely new medicine regime that we are getting to grips with. Beth has to return to hospital for a wound check on Wednesday and we also have to sort out a venue that can regularly check her blood clotting level, to dictate the strength of warfrin.
When we got home this afternoon, Bubby (her sister), Nanny and Grandad Dell had put some balloons and Welcome Home banners up outside. Beth couldn’t wait to sit in her chair in the living room and watch her favourite children’s satellite TV. She even helped Daddy water the garden this evening with the hose pipe (She was Sam and dad was Elvis, of course!).
We were told 6 weeks duration in hospital, Beth took 4 weeks. Just so pleased to move on in our lives and not have this dreaded operation hanging over us anymore.
11th June 4.50pm: Another day, another cannular. Poor love - she’s got more holes in her than a sieve. The last cannular lasted all of 3 days. She got into a real strop this afternoon when it was fitted, especially as they’re running out of visible, good veins to put it in, so they have a ‘good maul’ of her first.
Bethan made cakes today with the Play Specialist in the ward. She has just tucked into crackers and dairylea and says she’s looking forward to her spag bol later.
A doctor did mention the ‘H’ word today but didn’t put a time on it. They’re going to take tests over next few days re - her white blood cell count (indicates demise of the infection) and hopefully get on top of the soreness of the chest drain wounds.
10th June 2009 5.15pm: Energy levels are really high and the old giggly Bethan is back. Appetite has waned again. The Skin Specialist and Heart Surgeon met at Beth’s bed side this afternoon to consider her chest drain wound where the infection started - two of the wounds still look really red and angry. Have decided to maintain the antibiotics for another 10 days, have taken pictures and will discuss Bethan at their ‘pow-wow’ meeting on Friday (all cardiac patients are reviewed once a week with all specialists involved). They seem to be a bit mystified (some talk of an allergy) with what is causing it. We’re hoping its not going to mean another 10 days in hospital.
Beth said today: “Daddy, I miss all my school friends” - thinking of organising a coach trip for the 30 children to visit - they’ll all get precisely 2 minutes each with her!
Beth is now sharing an enclosed bay with a 4 year old boy called John. Played peek and boo with him with the bed sheets this morning. What a flirt!
7th June 2009: Beth has had a good couple of days. Her appetite and energy levels have been good. Took her down to the Lower Ground floor to the cafeteria on Saturday night and she walked all the way even though we had the buggy in tow. She didn’t seem to struggle with her breathing at all.
Mr Barron, the Surgeon, came to see the chest drain wound this morning ( as the surgeons have been doing daily since infection had set in) and he seemed pleased with the draining of the infection, and to continue on the antibiotics.
Disaster this afternoon as cannular in her hand ‘gives up the ghost’ and so they prepared her hand with the ‘magic numbing cream’ for re- cannularisation (she has got so much scarring of the veins from previous needles that this process is becoming more and more difficult to find a suitable entry point). Fortunately they have decided, in hindsight, to administer the rest of the antibiotics (possibly 2-3 days more) orally, so hopefully no more needles.
Oxygen saturations (SATs) only 80 ish today - we’re assuming it’s the probe is not picking up a good trace, as she has been achieving 86-90 in recent days.
4th June 2009 9.50pm: Had a bit of a scare yesterday into today as her infection had got worse. There was pus developing above the chest drain wounds and the fear was they would have to take her to theatre this morning to drain the infection. Fortunately, overnight, the pus sack had burst and is now ozzing nicely out of the wound. It never is straightforward with Bethan Cerys Edwards! Beth is on a drip of antibiotics.
In herself, she has been happy, laughing and playing around most of today with her appetite getting better. Salt and vinegar crisps were her favourite today.
2nd June 2009 8.40pm: A so-so day for Bethan. She did spike a temperature today however her energy levels have been okay. We have been for few walks with the supermarket trolley today (minus the chest drains), and managed to take her outside in the pushchair for a short while this evening.
She has been sedated most of the afternoon to get a cannular in her hand (again!). The medics may need to administer antibiotics and fluids (because it is so warm) via the cannular over the next few days. Beth hasn’t eaten very much today but did demolish a packet of crisps. She refused chocolate buttons twice so we know things aren’t quite right.
Millie, her friend, sent her a lovely card and picture which perked her up and, this evening, she started to be a little more cheerful, singing along to the Fireman Sam theme tune.
Her ‘bark is worth than her bite’ now with the doctors and nurses - we think she’s finally accepting that lashing out is not going to work.
1st June 2009 9.05pm: Not so good news today - they put Beth on antibiotics for the infection in the chest drain wound. This may throw her blood clotting levels out and so the warfrin dosage may need to be amended. Talk of going home soon may be a little premature.
Beth has been okay in herself and taken some ward walks to the playroom and back, although she is not eating very well.
31st May 2009 6.50pm: Great news! The 3 chest drains were taken out this afternoon, as the fluid coming out had reduced virtually to zero. Beth had to be sedated when they were removed, but didn’t kick up half as much fuss as before. The drains were a little infected and so a swab has been sent off for analysis, however the doctors don’t appear to be concerned.
The last cannular in the arm was also removed. She is now taking all her medicines orally. She’s drinking a lot but appetite is still patchy, although she tucked into her chicken roast dinner quite well today.
We can’t believe that we could be just a couple of days away from coming home. The hospital warned us it could be 6 weeks! It’s been 12 days or so. We’ll only breathe a sigh of relief when she’s passing the hospital exit.
30 may 2009 5:20pm: Bethan is has now been transferred into the main part of ward 12, she is continuing to please everyone. She again has been taking short walks up and down the ward with her shopping trolley. All drains are still in tact but she is coming along nicely.
Her central line was taken out yesterday.
28 May 2009 1pm: Took her first few steps this morning for a trip to the fish tank at the bottom of the corridor. Chest drains went in a mini shopping trolley so we pretended to be in Morrisons, stopping off at the book rack on the way back for a book to take back to bed. She did find the walk really tiring and wanted to get back to bed by the end of it.
The central line to the neck is due out today so she’ll only have the line into her hand for drugs. Pacing wires have been removed and she doesn’t need the oxygen support during the day, with oxygen saturations at around 91% at best (she was used to sats of around mid 70’s before operation). Morphine is also off with pain relief provided by Codene.
Beth’s personality has completely returned, with lots of smiles, ‘whys’ and humour. Being touched is still a major problem for her - even something as simple as putting the thermometer strip underneath her arm - we’re thinking of doing some stickers for the meds saying “I treated Bethan and survived!”. Her eating is getting better and we had a ‘fruit and chocolate’ party last night.
25th May 2009 2.10pm: The last couple of days have been very positive. Beth is starting to regain her appetite, and that glowing smile has returned to her face. Fireman Sam remains her favourite DVD to watch and has started singing along to the signature tune. Has asked ‘Why?’ To a couple of things today so she must be getting better!
The pacing box to her heart should be removed tomorrow and her oxygen saturations are at around 90% with a little, constant oxygen support from a nasal tube. Morphine is being scaled down and pain relief is provided by some paracetemol.
Beth continues to hate being handled (they do things to her around 4-5 times an hour - take blood for analysis, take temperature and blood pressure, measure her breathing, administer several drugs etc etc), and lashes out almost every time. The meds are getting used to it and try to pass on what she’s like to the next shift but still they get surprised by the ferocity of objections (e.g. The first thing that Intensive care said to us immediately after the operation was “We’ve heard Bethan is a bit feisty!”). We’re using watching Fireman Sam DVD as a lever for cooperation, or perhaps a promised drink - what cruel parents!
They have started her on Warfrin today (blood thinning drug) that she will take for the rest of her life. She can now be lifted onto a commode for the toilet although we have to be careful as there are still numerous lines attached to her - not withstanding the 3 rather thick tubes emerging from the base of her chest that drain excess fluids from the lungs into 3 bottles placed on the floor.
23rd May 2009 3:50pm: Bethan is recovering well in HDU. She is happy watching the T. V., she has had her nasogastric tube taken out and the lines out of her neck have been reduced.
22nd May 2009 9:10pm: Bethan is doing very well at the moment, despite a few tantrums early this morning (she had to be put to sleep twice as she was very unhappy with being touched). She started coming around at 2am ish and made good progress over the ensuing hours. She has been moved down to the High Dependency Unit on ward 12 this evening. It has been decided to sedate her for the time being as she continues to get very agitated when anyone in a uniform comes near her. This will stop her pulling any wires out. So far, doctors are impressed with her progress.
21st may 2009 10:05pm: Bethan went in for surgery at 2:45 this afternoon and the operation was said to run according to plan. She came out at 8pm and is doing well in intensive care. They have closed her chest up (on stage 1 and 2 they left it open for a few days to allow any swelling to go down). Heart scans later on this evening have confirmed that so far all is going to plan. She remains on a respirator and should be slowly woken up overnight.
20th May 2009 8:50pm: Bethan is recovering well from catherisation which she had earlier today. Heart pressures were good and the stent put in place last year in the lung artery is functioning well. The Consultant stretched it a little to accommodate future growing. The plans for tomorrow’s stage three is still going ahead around 1pm.
18th May 2009 2.30pm: Bethan is due into Birmingham Children’s Hospital tomorrow. They have decided today to do a catherisation procedure (measuring the internal heart pressures) on Wednesday with the main surgery on Thursday.
Overall it was a really good visit and as we left the hospital, a sort of closing volume on Beth’s life to date. All the staged operations are complete, a very difficult first 12 months but a lot of optimism for the future. I commented to Mandy that perhaps our Autumn car boot sale may include a pram for sale -
Mandy did ask about ‘what’s next’ and we got an answer that we both expected, but parents will always look for a more definitive answer than they can give. Dr Tariq was very honest and balanced with us in saying that nobody can tell. Oldest surviving patients through these procedures in the UK are in their early 20’s and generally are doing well. Of course, none of them are athletes or football players but have a quality of life that is close to normal. Sometimes patients need the hospital and further interventions a lot more than others. Every hypoplast is different.
It was nice at the end of this meeting because Dr Tariq had been involved with Bethan from the start, and he reflected with us about the dark days in PICU in the first few months and how poorly she was. He said it’s really nice for all the medical staff to see Beth as she is now, as not every patient has a happy ending.
We also had a visit to Worcester Hospital in the morning for her blood level (INR) check. This has been a regular, twice-
Also this week Beth went into school for a few hours as it was ‘move up’ day where the children meet their new class teacher. She enjoyed that although she came back and slept for a couple of hours after. She’ll be back to school in September.
21st June 2009 11.00am: Beth has quickly adapted to home ... when we got home last Sunday, the first she did was hug the telly and said "I've missed you!".
She's fine in herself, maintains a good face colour and hasn't been out of breath, although she hasn't exerted herself yet. She's helped water the garden (she says "Dad, I'll be Sam and you be Elvis" as I have to take a support role with holding the hose). Her favourite word at moment (apart from 'why') is 'careful' whenever we pick her up or hug her, and points to her chest. Me thinks there is a certain amount of 'milking it' going on.
Had lots of issues this week in setting up her I.N.R. Blood clotting tests locally (she has to have this carefully monitored as the Warfrin drug deliberately thins her blood to lessen the chance of a clot developing in her weakened artery system. If the blood thins too much she might be in trouble if she falls over and bleeds, or has an internal injuries sustained) -
Mandy put in a repeat prescription for the new regime of drugs, to our local surgery, as the hospital only gave us minimum supplies (understandably). Our G.P., Dr Jones rang up a few hours later surprised to receive it and that nobody had informed him that Beth was out -
14th June 9.00pm: Bethan is home at last! 2 days ago the Sister said that there had been a meeting and the plan was to release Bethan today. It all depended on whether the surgeons were happy with the wound when they changed the dressing . They were and armed with 5 different medicines we got home at 4pm.
She is in very good spirits (and has developed an even more infectious laugh than before -
She is still on antibiotics for the wound infection, and a completely new medicine regime that we are getting to grips with. Beth has to return to hospital for a wound check on Wednesday and we also have to sort out a venue that can regularly check her blood clotting level, to dictate the strength of warfrin.
When we got home this afternoon, Bubby (her sister), Nanny and Grandad Dell had put some balloons and Welcome Home banners up outside. Beth couldn’t wait to sit in her chair in the living room and watch her favourite children’s satellite TV. She even helped Daddy water the garden this evening with the hose pipe (She was Sam and dad was Elvis, of course!).
We were told 6 weeks duration in hospital, Beth took 4 weeks. Just so pleased to move on in our lives and not have this dreaded operation hanging over us anymore.
11th June 4.50pm: Another day, another cannular. Poor love -
Bethan made cakes today with the Play Specialist in the ward. She has just tucked into crackers and dairylea and says she’s looking forward to her spag bol later.
A doctor did mention the ‘H’ word today but didn’t put a time on it. They’re going to take tests over next few days re -
10th June 2009 5.15pm: Energy levels are really high and the old giggly Bethan is back. Appetite has waned again. The Skin Specialist and Heart Surgeon met at Beth’s bed side this afternoon to consider her chest drain wound where the infection started -
Beth said today: “Daddy, I miss all my school friends” -
Beth is now sharing an enclosed bay with a 4 year old boy called John. Played peek and boo with him with the bed sheets this morning. What a flirt!
7th June 2009: Beth has had a good couple of days. Her appetite and energy levels have been good. Took her down to the Lower Ground floor to the cafeteria on Saturday night and she walked all the way even though we had the buggy in tow. She didn’t seem to struggle with her breathing at all.
Mr Barron, the Surgeon, came to see the chest drain wound this morning ( as the surgeons have been doing daily since infection had set in) and he seemed pleased with the draining of the infection, and to continue on the antibiotics.
Disaster this afternoon as cannular in her hand ‘gives up the ghost’ and so they prepared her hand with the ‘magic numbing cream’ for re-
Oxygen saturations (SATs) only 80 ish today -
4th June 2009 9.50pm: Had a bit of a scare yesterday into today as her infection had got worse. There was pus developing above the chest drain wounds and the fear was they would have to take her to theatre this morning to drain the infection. Fortunately, overnight, the pus sack had burst and is now ozzing nicely out of the wound. It never is straightforward with Bethan Cerys Edwards! Beth is on a drip of antibiotics.
In herself, she has been happy, laughing and playing around most of today with her appetite getting better. Salt and vinegar crisps were her favourite today.
2nd June 2009 8.40pm: A so-
She has been sedated most of the afternoon to get a cannular in her hand (again!). The medics may need to administer antibiotics and fluids (because it is so warm) via the cannular over the next few days. Beth hasn’t eaten very much today but did demolish a packet of crisps. She refused chocolate buttons twice so we know things aren’t quite right.
Millie, her friend, sent her a lovely card and picture which perked her up and, this evening, she started to be a little more cheerful, singing along to the Fireman Sam theme tune.
Her ‘bark is worth than her bite’ now with the doctors and nurses -
1st June 2009 9.05pm: Not so good news today -
Beth has been okay in herself and taken some ward walks to the playroom and back, although she is not eating very well.
31st May 2009 6.50pm: Great news! The 3 chest drains were taken out this afternoon, as the fluid coming out had reduced virtually to zero. Beth had to be sedated when they were removed, but didn’t kick up half as much fuss as before. The drains were a little infected and so a swab has been sent off for analysis, however the doctors don’t appear to be concerned.
The last cannular in the arm was also removed. She is now taking all her medicines orally. She’s drinking a lot but appetite is still patchy, although she tucked into her chicken roast dinner quite well today.
We can’t believe that we could be just a couple of days away from coming home. The hospital warned us it could be 6 weeks! It’s been 12 days or so. We’ll only breathe a sigh of relief when she’s passing the hospital exit.
30 may 2009 5:20pm: Bethan is has now been transferred into the main part of ward 12, she is continuing to please everyone. She again has been taking short walks up and down the ward with her shopping trolley. All drains are still in tact but she is coming along nicely.
Her central line was taken out yesterday.
28 May 2009 1pm: Took her first few steps this morning for a trip to the fish tank at the bottom of the corridor. Chest drains went in a mini shopping trolley so we pretended to be in Morrisons, stopping off at the book rack on the way back for a book to take back to bed. She did find the walk really tiring and wanted to get back to bed by the end of it.
The central line to the neck is due out today so she’ll only have the line into her hand for drugs. Pacing wires have been removed and she doesn’t need the oxygen support during the day, with oxygen saturations at around 91% at best (she was used to sats of around mid 70’s before operation). Morphine is also off with pain relief provided by Codene.
Beth’s personality has completely returned, with lots of smiles, ‘whys’ and humour. Being touched is still a major problem for her -
25th May 2009 2.10pm: The last couple of days have been very positive. Beth is starting to regain her appetite, and that glowing smile has returned to her face. Fireman Sam remains her favourite DVD to watch and has started singing along to the signature tune. Has asked ‘Why?’ To a couple of things today so she must be getting better!
The pacing box to her heart should be removed tomorrow and her oxygen saturations are at around 90% with a little, constant oxygen support from a nasal tube. Morphine is being scaled down and pain relief is provided by some paracetemol.
Beth continues to hate being handled (they do things to her around 4-
They have started her on Warfrin today (blood thinning drug) that she will take for the rest of her life. She can now be lifted onto a commode for the toilet although we have to be careful as there are still numerous lines attached to her -
23rd May 2009 3:50pm: Bethan is recovering well in HDU. She is happy watching the T. V., she has had her nasogastric tube taken out and the lines out of her neck have been reduced.
22nd May 2009 9:10pm: Bethan is doing very well at the moment, despite a few tantrums early this morning (she had to be put to sleep twice as she was very unhappy with being touched). She started coming around at 2am ish and made good progress over the ensuing hours. She has been moved down to the High Dependency Unit on ward 12 this evening. It has been decided to sedate her for the time being as she continues to get very agitated when anyone in a uniform comes near her. This will stop her pulling any wires out. So far, doctors are impressed with her progress.
21st may 2009 10:05pm: Bethan went in for surgery at 2:45 this afternoon and the operation was said to run according to plan. She came out at 8pm and is doing well in intensive care. They have closed her chest up (on stage 1 and 2 they left it open for a few days to allow any swelling to go down). Heart scans later on this evening have confirmed that so far all is going to plan. She remains on a respirator and should be slowly woken up overnight.
20th May 2009 8:50pm: Bethan is recovering well from catherisation which she had earlier today. Heart pressures were good and the stent put in place last year in the lung artery is functioning well. The Consultant stretched it a little to accommodate future growing. The plans for tomorrow’s stage three is still going ahead around 1pm.
18th May 2009 2.30pm: Bethan is due into Birmingham Children’s Hospital tomorrow. They have decided today to do a catherisation procedure (measuring the internal heart pressures) on Wednesday with the main surgery on Thursday.
27th September 2009 - Beth has made a good recovery over the Summer and is back at school full time. Her energy levels are good and rarely gets out of breath. Twice now, she has walked to school - about three quarters of a mile (with us trailing with the buggy), although most of the time she will walk half way and then let the buggy take the strain. She is never blue in the face and fingers.
Schooling wise she is in Year 1 but she has a lot of catch up to do. Our aim is to achieve more consistency in her attendance this year. Bengeworth School remain very supportive and caring with a great Teaching Assistant who supports her.
This week she had her first cold since the operation and it has developed into chest infection (as always!). The good thing is she is rarely on antibiotics now. Before stage 3, it seemed every other week.
She continues to have her INR (blood thickness) checked every 1-2 weeks and tends to stay within, or close to, the 2-3 reading recommended by cardiac staff. She takes enalapril (dilates arteries) twice a day, warfarin (blood thinning) once a day and her inhaler.
9th July 2009: Post op check up at Birmingham this afternoon and what a visit (even Bethan was a s good as gold without any tantrums)! First, oxygen saturations were checked by the Nurse. One one hand they were 91%! Convinced that the machine wasn’t picking up properly (despite the nurse saying it was a good trace), we asked to check the other hand. This time 95%! Incredible... She has never been above early 80s and it has shown with her face colour and heavy breathing in the past.
Dr Tariq examined Beth with stethescope and then had a look at the heart with his probe. Result was a very contented doctor and (relieved) parents. He said function of the heart is good and as you would expect of a hypoplast child. No build up of fluid on the lungs or around the heart. She does have a leaky heart valve (which has always leaked with her), but not excessively at this stage. He did say that this valve is shared by the heart chambers (whereas normally in hypoplast cases there are 2 valves), so would need to watch that over the next few years that it doesn’t get more leaky.It may need replacing.
Schooling wise she is in Year 1 but she has a lot of catch up to do. Our aim is to achieve more consistency in her attendance this year. Bengeworth School remain very supportive and caring with a great Teaching Assistant who supports her.
This week she had her first cold since the operation and it has developed into chest infection (as always!). The good thing is she is rarely on antibiotics now. Before stage 3, it seemed every other week.
She continues to have her INR (blood thickness) checked every 1-
9th July 2009: Post op check up at Birmingham this afternoon and what a visit (even Bethan was a s good as gold without any tantrums)! First, oxygen saturations were checked by the Nurse. One one hand they were 91%! Convinced that the machine wasn’t picking up properly (despite the nurse saying it was a good trace), we asked to check the other hand. This time 95%! Incredible... She has never been above early 80s and it has shown with her face colour and heavy breathing in the past.
Dr Tariq examined Beth with stethescope and then had a look at the heart with his probe. Result was a very contented doctor and (relieved) parents. He said function of the heart is good and as you would expect of a hypoplast child. No build up of fluid on the lungs or around the heart. She does have a leaky heart valve (which has always leaked with her), but not excessively at this stage. He did say that this valve is shared by the heart chambers (whereas normally in hypoplast cases there are 2 valves), so would need to watch that over the next few years that it doesn’t get more leaky.It may need replacing.
Bethan - Post Stage 3 Operation - July 2009
21st March 2010 -
1st March 2010 -
28th February 2010 -
INR level is being checked every 4 weeks now so it’s saved us a few journeys to Worcester. We have a check up at Birmingham in the middle of March.
20th November 2009 -
This week we have had a swine flu scare at school and so had to withdraw Beth from school as she may suffer very badly if she catches it. She has been on tamiflu since Wednesday and gets her swine flu vaccination tomorrow. Hopefully she will be back at school on Monday.
She remains an enthusiastic school pupil although her progress is painfully slow. She can count to 10 by herself but struggles with writing letters. She has just started reading her first words (rat, cat, mat etc).
The re-
Bethan’s 6th birthday party - 25th April 2010
30th May 2011 -
In recent months, her behaviour has deteriorated Most of the time, she is a polite, well mannered child. However every so often she will dig her heels in and is determined to get her way. This frequently results in a full blown tantrum (just after Christmas, it lasted over 2 hours of screaming and pushing behaviour). It will kick off at the slightest thing. Last week, she started spitting. We are organising a behavioural specialist to talk to us and also a trip to the Educational Psychologist in the next few months.