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Post by vickia on Sept 24, 2006 20:13:32 GMT
Thomas has an appointment with the surgeon on Tuesday to discuss his AVSD repair. I'm absolutely terrified now!! I don't know what to expect and I don't know whether we will get a date for his op on Tues or later. Thomas was supposed to see the cardiologist on Weds after he was discharged from the hospital last weekend. The Dr wanted to see Thomas within 2 weeks of discharge. We got a letter on Fri saying this app had been cancelled and his new app was 8th November!!!!!! I rang and complained and they have brought this forward to 4th October. It seems like they don't really care once Thomas isn't in the hospital. They haven't even told me what to look out for if he's ill or anything. I feel a bit helpless and I'm constantly worrying about his cos all this is new to me. Thomas started on Sma High Energy yesterday as recommened by the dietician. Since then he's been really grizzly, had diahorrea and has been sick this evening. Does anyone know if this is normal when changing baby milk or should I take him to the docs? I probably sound totally stupid but I'm worried sick that I'll miss something Anyway, any advice or comments would be greatly appreciated. Vicxx
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Post by Jojo on Sept 25, 2006 13:16:58 GMT
Awww, you're not having a great time at the mo are you?
Can't really help you on the heart side, though I'm sure when Rilith signs in she'll have some advice.
On the food side, I know it can affect babies when you change milk, but if he is really grizzly, I'd take him to see the GP, you maybe just ring them to get advice.
Hope you get things sorted soon to get the ball rolling.
Take care, Jo.xx
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Post by Rilith on Sept 26, 2006 11:17:54 GMT
With it being very rich the food can cause a bit of tummy upset at first and then followed by the wonderful constipation... LOL
I hope everything is going well at the appointment today hun (it is today isn't it???) Please let us know how you get on.
What kind of things would you like to know???
Holly's hands go a horrible dusky purple colour when she isn't doing too well.
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Post by vickia on Sept 26, 2006 16:19:48 GMT
Just seen the surgeon about Thomas' op. He should have been going in this week apparently but there are 2 emergency patients that have been put in before him. The next slot will definately be within the next 4 weeks!
The surgeon we saw seemed a bit cold and callous but then I suppose thats how they have to be. When he told me about the odds of Thomas making it through the surgery I couldn't stop crying but it didn't seem to phase him at all! We spoke to a really nice cardiac liaison nurse tho who was much more reassuring and answered all our questions fully. Just waiting now for the dreaded phone call........
I'll keep you all up to date when I can. I know some of you on here have been through similar situations and its really reassuring to me that you're all doing so well. So thanks to you all for your advice and support. I really appreciate it. xx
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Post by Rilith on Sept 26, 2006 16:48:46 GMT
Thats the scariest part for me too. I hate hearing the odds. Glad the appointment went well though. Its just a waiting game now.
Always here if there is anything you need to know
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Post by Jojo on Sept 26, 2006 19:11:46 GMT
Hope you're ok hun.
We're all here if you need to vent.
Jo.xx
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julie
Junior Member
Posts: 84
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Post by julie on Sept 26, 2006 20:45:41 GMT
keep ur chin up xx
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Post by Rilith on Sept 27, 2006 13:43:37 GMT
((((((((((((((((((((((HUGS))))))))))))))))
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Post by vickia on Sept 28, 2006 12:11:57 GMT
Thanks everyone! I called the Downs Heart Group yesterday and they were great. This was recommended by the liaison nurse at the hospital. The lady I spoke to was really positive and gave me much more info than the hospital did so I'm really glad I rang them.
I'm not doing so good at the mo and I think the depression thing is kicking. I can't stop crying because I really don't want to put Thomas through the surgery but I know I have no choice. Its all I can think about. I dread the phone ringing cos I know that sometime soon it will be to hospital with a date to go in. I'm sorry to go on all the time about this but I just feel so helpless. My other son is at school and my husband is at work so I feel so isolated and alone. I really don't know how I will cope with all this. Everone on here seems so strong about everything. I must seem pathetic!
Anyway, thanks for your messages of support. I'll post the date for Thomas' surgery when I get it.
xx
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Post by Daniella on Sept 28, 2006 12:54:28 GMT
vickia - dont be so silly - we have all been through what you are going through and ithink at times we ourselves have felt a bit silly worrying over things if you look through the site we have some people's stories about how they found out about the downs and how we all felt when we were going through the grieving process - which i think may be a bit worse for you as we all got to know our children with downs - you spent weeks with your son getting to know him and then i bet it felt like you had to get to know him all over again after the diagnosis - most of us parents have gotten over the grieving process - you have just started it - so what you are feeling is natural - just think - one day you will be in our positions feeling strong about everything and we will have a new member who has just started out with their child and you will probably say exactly what i have said to you - keep strong we are all here for you ((((((((HUGS))))))))
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Post by Rilith on Sept 28, 2006 12:57:09 GMT
You are so not pathetic hun. I have also suffered a huge depression due to everything we have been through with Holly (read Riliths Therapy) I understand the heartache hunni.
I am going through it too... LOL I think to myself some days, OMG I wish they would just get it done and over with and then other days I'm like NOOOO Touch my baby and I will KILL you!!... LOL
Its an ongoing battle.
How has hubby been since finding out???
My GP and HV refered us to the parent and baby clinic where they treat PND, it would be a good thing for you to see if there is anything available for you like that in your area. I totally recommend it and get your hubby to go with you too hun. Carl came with me and it was such an eye opener and helped us to put things into the right perspective and helped us to talk in detail about how we feel and it united us even more.
You are never alone in this world while you have your PC hun. We might be hundreds of miles away from you right now, but in spirit we are all sat together arm in arm.
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Post by Jojo on Sept 28, 2006 18:45:42 GMT
(((((hugs))))))
Please don't think you are being silly, I can only imagine what you're going through at the moment.
As you can see, you have lot's of support on here, and with those who have got through to other other side.
Take care.xx
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