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Post by sarahncharlimai on May 12, 2007 21:42:17 GMT
well we went to Birmingham for Charli's heart check and all is well at the moment the consultant says she has a complete avsd with a small vsd and says she is doing really well from a cardiac point of view, although she didn't have a scan or ECG (which we expected thought this was done every visit) he says that they want to hold of doing the opp until she is 2 2half as she is doing so well and he reassured us that she would not have been in heart failure before and that her being poorly was nothing to do with her heart. Obviously we are over the moon with this news but we were slightly disappointed with the consultant as he did not give us a chance to ask any questions and when i did ask something he said as Ive just said in my last sentence i mean I'm not a doctor and struggle to understand all the jargon and terminology they use we were in there all of 10 Min's and it took us two hours to get there. oh well rant over at least it was good news x x
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Post by shirley on May 13, 2007 13:38:51 GMT
That is great news and Im sure very reassuring for you all, although we were told by our consultants that if the AVSD is not repaired before 9 months that it can cause future problems with the lungs as the pressure in them will have adjusted to suit the defect. Now maybe they just do things differently over here in NI but I would ask why they want to wait so long...
Shirley xx
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Post by Rilith on May 13, 2007 15:50:17 GMT
Awwww Glad all is looking well.
We go on the train, how do you go??? Only takes 50 mins and you don't have the hassle of parking.
I think it all depends on the severity of the AVSD. Holly will be almost 2 by the time hers is done too. I think it makes it more risky for Pulminory hypertensionif they leave it too long. What I found that helped me was researching on the net for all variations on the condition. Then I was backed up with some of the terminology. Sometimes its a matter of just saying that I didn't understand what they meant by that and got them to explain it better. I have so many little diagrams that have been drawn by them while discussing what they mean. I swear they dread me going for appointments... LOL
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Post by claireyd22 on May 13, 2007 16:30:04 GMT
Hiya, Glad you got good news at bch but you do sound a bit unsure. I must admit I always feel like I understand what they're saying at the time but then when I get home and start to repeat it to other people I feel totally confused and don't seem to understand at all. When they first detected george's heart condition he was just coming up three months old, Dr Wright (at bch) said it was a partial AVSD and wouldn't need operating on til he was 2 or 3. But they would see him every 3 months. When we went back 3 months later they said he actually had a complete AVSD and pulminary hypertension and they would like to do a cardiac catheter very soon. This was done a week later, then we got a call 3 days after that saying they wanted him in the following week for the acutal surgery. Between the fisrt scan and the second George was very slow gaining weight and was getting quite clammy while feeding and we also noticed his breathing was becoming quite short. I'm sure they must be very pleased with how Charli is as they are very thorough, and if she isn't showing any signs of difficulty with feeding and breathing etc then its better to wait til she's older to do the operation. If you are still feeling worried maybe you could phone the secretary at the hospital for letter saying what they found and then ask your hv to translate it. Its really difficult at the appointments isn't it coz your're worried and anxious and they explain things so quickly in words we've never heard before. Who did your appointment? They don't sound very friendly if you couldn't ask any questions. Oh, I've just thought they have Cardiac Liasson (sp?) nurses at bch who explain things to parents in a language you can understand. Don't know if they are just for in-patients or not but maybe worth a call to put your mind at rest. Sorry this is so long but I just wanted to make you feel better. Take care, Claire x
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Post by sarahncharlimai on May 13, 2007 19:31:12 GMT
When i was pg we used to see Dr Wright, he was lovely now we see Dr Dhilion although this time we sore Dr Rama, we go by car Rilith Mark would not even consider the train but he drives there so im not bothered. The very first time we had Charli seen with Dr Dhilion he did show us pictures and spent a while talking us through her defect but you hit the nail on the head there girls, you think you understand but you then realise that you actually dont, I tried to tell Dr Rama that ive noticed Charli been abit sweaty lately and her colour going purplish but he basically said that this would not happen with the level of defect she has got (so i guess im lying then) not sure wether this was due to her being unwell as its only happened the last couple of weeks. I have looked on the internet many times and still find it hard to read it how i understand but i did think that if they left it to long it could cause further problems so i did mention this he was quite rude really and said she only has a small vsd so surgery is not urgent, he might aswell speak another language for how much i understand lol. Basically although she has got a complete avsd they are treating her like she has a partial avsd which is why they will wait, next appointment is nov 13th. Think i will ring 2moz about the cardiac nurse it cant hurt can it? PMSL @ RILITH X X
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Post by shirley on May 13, 2007 21:26:30 GMT
I am sorry if I alarmed you, I wasnt aware that there was different severities of an AVSD, silly me lol !!! We can always count on Rilly to keep us well informed.
Grace didnt have many purple episodes either with hers infact she seems to be having more of them now that it is fixed, which to be honest is a bit worrying. Apparently this is normal, But as you have said hey, what do we know !!!
Keep us all posted on little charli mais progress
Shirley xx
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Post by shirley on May 13, 2007 21:54:44 GMT
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Post by Rilith on May 14, 2007 19:26:18 GMT
Shirl, don't worry too much about any purply episodes just yet. She is just getting over a major surgery the heart still has a very long way to heal yet.
Sarah, have you asked about getting home oxygen for when Charli gets clammy. Holly has O2 at home and has been a godsend when she hasn't been well. It just helps to give her that little enegry boost when we feel she is struggling a little
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Post by sarahncharlimai on May 14, 2007 20:15:11 GMT
would i need to ask birmingham about that rilith? i thought that the frusimide helped when she was poorly she picked up loads when she had that little dose yet birmingham didnt mention it and to be honest i was that shocked at his attitude that it threw me off everything that i was going to mention, have you got a cardiac liasion nurse? ive been told by a couple of people that birmingham offer this but we have not heard anything, is this service just for those were are undergoing surgery now?
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Post by sarahncharlimai on May 14, 2007 20:28:58 GMT
Shirley: thanks for the webpage, still find it hard to understand there is so many complicated words lol, guess i am just worrying incase they leave it to long and it causes further problems with her other organs iykwim, but ey they are the professionals. Hope Grace is well she is such a brave little lass big cuddles coming her way x x
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Post by Rilith on May 14, 2007 21:04:53 GMT
Our BCH nurse is a lady called Justine. She is ever so nice. If you phone the out patients ward and ask for a cardiac liason nurse to ring you they usually phone you back pretty quick. More often than not they introduce themselves when it comes up to surgery time. We were lucky enough to meet Justine while we were still PG with Holly.
The nurse will have Charli's notes with her while she is on the phone, so just ask any questions then, if she needs to speak to the consultant she will call you back with some info. hopefully in lamans terms for you.
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Post by claireyd22 on May 14, 2007 21:20:03 GMT
Hey, we saw Justine too, she is lovely isn't she. Sarah, I'm sure I've got a leaflet with the liasson nurses phone number, do you want me to put it on here for you. I can't get it til tomorrow though as I'm dog sitting at my mums at the mo! but I'll be back at home tomorrow xx
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Post by sarahncharlimai on May 14, 2007 21:35:26 GMT
Thanks Rilithx Claire that would be great thanks when you get chance hun x
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Post by claireyd22 on May 15, 2007 13:08:37 GMT
Hi Sarah, i've got that number for the Cardiac Liaison Sisters 0121 333 9449. Justine was really helpful, can't remember the name of the other lady we saw - think it might be Diane but she was great too. She showed us round intensive care b4 George's op and even came to see him in there afterwards to check we were ok with everything. I'm sure they will be able to put your mind at ease. Let us know how you get on x
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Post by sarahncharlimai on May 15, 2007 15:22:16 GMT
Hi claire, thanks ever so much for the number i have phoned this afternoon, you were right she seems very nice, she is going to look through Charli's notes and speak to her consultant Dr Dhilion and ring me back, she is going to try and arrange to come out to see us if not then we can go to her, so she can explain everything to us in a way we can understand. Thanks again x x
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Post by shirley on May 15, 2007 16:59:16 GMT
aww thats great news, so pleased for you. The Liason nurses and sister have been fantastic with us and grace, coming to the house and ringing to check on her. Its great to have a point of contact if your ever concerned about charli
Shirley x
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Post by claireyd22 on May 15, 2007 19:50:06 GMT
Thats good Sarah. You sound happier already. Its nice to know that there's someone you can ask without feeling like your taking up the doctors time x
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Post by odiness on May 16, 2007 20:59:58 GMT
Hi Sarah
Just wanted to say I'm glad that you got good news about Charli from the hospital and that you are now getting the additional support you need and able to get answers to your questions. I'm sure that it must be really daunting to not understand some of the technical, medical jargon about your own little girl, sometime you just wish medical professionals would speak in English not Latin! lol Take care both of you. Lucy x
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Post by claireyd22 on May 29, 2007 21:09:34 GMT
Hi Sarah, just wondered how you got on with the Liaason nurses at bch, did they call you back x
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Post by sarahncharlimai on May 29, 2007 21:15:20 GMT
Hi Claire, yes Justin phoned back im going to see her on Thursday at bmc, bit nervous has never drove there on my own before Mark cant get the time off sure ill be fine though. Will let you know how i get on, Thanks again x
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Post by sarahncharlimai on May 31, 2007 21:02:44 GMT
Met with Justin today at bmc (managed to get there driving on t motorway on my own lol) feel so much better now she has explained things and she gave me some diagrams of a normal heart and that of a heart with avsd so i could see the difference. She said that the consultants may well say in November that they will speak to the surgeons with a view to operating some time after that, she also said that there is a high chance that Charli made need further surgery in years to come which we didnt realise. So it was well worth going, Thanks again Claire x
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Post by claireyd22 on May 31, 2007 21:41:09 GMT
Hi Sarah. Firstly, well done on getting there (and back)! I'm glad that you're feeling better about things after talking to Justine - she's really nice isn't she. They said the same about George that he may need more surgery later as the valve they worked on is still leaking. Apparently it is normal for that to happen and it isn't causing him any problems for now. When do you have to take Charli back?
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