Big day tomorrow

Kazobel

Not sure if I can post this here but I figured if people can post relationship type threads to get some support this might be OK too since I post here alot. As you all know I date a girl (Hexx) and Hexx has two daughters from her ex-marriage. One is 5 and one is 8 months and has Down syndrome. The father left the day the baby was born mainly because he was embarrassed about her (it was obviously a hit to his manhood to have a DS child :rolleyes: ) but that's not what this thread is about.

The baby has a thing called a PDA and it basically means she has a hole between her heart and lungs and blood is slowly filling her lungs. For months now we've been trying to get her weight up so that she'd be strong enough for the operation to seal the hole (she's eight months and is still only 10 pounds which anyone who has kids will tell you is tiny for her age) but Friday we got the go ahead for the operation. She went in today and Hex is there with her now(I couldn't stay because I have an appointment about my hormones tomorrow that takes 3 months to get and if I don't go I won't get my next hormone prescription or another appointment for another 3 months so Hexx sent me home so I'm up bright and early ). They've been doing tests all day and I'm just back from the hospital an hour and Hexx just rang me to say that the operation is going ahead tomorrow afternoon so I'm hoping to get there in time to be there for both of them. The operation is pretty non invasive because all they do is inject a Cathather (sp?) into an artary in her groin and feed it to her heart and when it gets to the hole expand a tiny balloon that plugs the hole, afterwards her quality of life will greatly improve because at the moment she finds it hard to feed because she can't breath and eat at the same time so after this she'll be able to put on real weight. The biggest worry right now is how she'll react to the anysthetic which is why she needed to be over 10 pounds before they'd even consider it but finger crossed it'll all be fine. Sorry for posting it here but when you're sitting on your own worrying and it's on your mind you need to get it out.

Lizzykins

All the very best. I do hope all goes well. Keep us posted.

Karoma

I believe the term is 'stent'. They have a very high success rate, but fingers crossed anyway.

Kazobel

Karoma wrote: »

I believe the term is 'stent'. They have a very high success rate, but fingers crossed anyway.

It is but I'll be honest we've had to discribe it so many times over that last few months that we've stopped using medical terms and just used the easiest description possible, not everyone knows what a stent is. Thanks for the good wishes and you too Lizzykins

Zaph

Best of luck tomorrow Kaz

Rattlehead_ie

All I can say is best of luck to you and Hexx and specially baby. I hope it goes well and as far as I know and as Karoma said a high success rate.

Clare Bear

Best of luck Kaz, I'm sure everything will be fine, let us know x

Fingers and toes crossed for the little one.

embee

Best of luck to Hexx and her wee one - 10lbs is teeny weeny for an 8 month old but she sounds like she has a lot of fight in her.

Will be thinking of ye all tomorrow.

Jules

You can post what ever you need here Kaz. Best of luck for you and hexx and your little girl. Keep us up to date with how things are going.

Jules

monkeyfudge

Hope it all works out okay.

It's a routine enough procedure, but certainly not nice to see one so young have to undergo it.

Best of luck.

Blush_01

Fingers crossed for all of you. Angio stuff is always frightening, just focus on the positive.

Kazobel

Rattlehead_ie wrote: »

All I can say is best of luck to you and Hexx and specially baby. I hope it goes well and as far as I know and as Karoma said a high success rate.

Aww yeah, there is a high sucess rate and the consultant reckons she'll be home by Wednesday because as I said it's pretty non invasive, the biggest thing isn't the operation but the anysthetic (I know I'm spelling that wrong), it's just because of the Downs and her size it adds extra risk but I'll keep you all posted when I can, tomorrow will be very busy for me so it may be late.

Here she is with our friend just so you's can see how cute she is, she's our little world, both her and her sister are :

Kazobel

Jules wrote: »

You can post what ever you need here Kaz. Best of luck for you and hexx and your little girl. Keep us up to date with how things are going.

Jules

Thanks, that means alot

embee

Aah God,

She is so cute And so dainty!!! She puts the cluck on me big time - I want another!!!

Best of luck again - let us know how she gets on!

Rattlehead_ie

Jesus Face!
She is tiny. awwwwwwwwh.
Best of luck again

Blush_01

Oh God, she's gorgeous. Poor poppet.

Kazobel

***sorry getting rid if this post for anonimity reasons**

hello_kitty

Ah Kazobel what a lovely family you have. Best of luck tomorrow and rest assured SarahBear will be in all our hearts and thoughts.

Kazobel

hello_kitty wrote: »

Ah Kazobel what a lovely family you have. Best of luck tomorrow and rest assured SarahBear will be in all our hearts and thoughts.

I know, I adore them, I'm not the biological parent but I love them as if I was. I love Hexx, I love her girls and wish they were mine. The irony is that it took a Transsexual for Hexx to see how much a man her ex really is and it's not much, I actually think by definitions of "a man" I pass better than he does because at least we share the responsibility, Sarahbear will be fine (I have to keep telling myself that) and tomorrow will be a better day for her, once that hole is sealed she'll be grand

Crumble Froo

your sarahbear will be fine sending good thoughts back to you from nz, you have an absolutely adorable family, and i wish ye all the absolute best in life

Quality

I hope everything goes well for you today, I will say a little prayer for you today.

I am a big believer in positive thinking, so stay positive.

She is a little beauty!!

Maple

she is just gorgeous! what a little angel!

Best of luck for the op today guys, thinking of ye.

Star Lord

Best of luck for all of you Kazobel, hope it all goes smoothly and that the baby is giggling and playing with you all in no time again

smashey

Hope everything goes well Kaz.

citytillidie

Best of luck Kaz

Fingers crossed everything goes well

Crumble Froo

Will

Hope all goes well, and the stress meter in the family isnt too high.

Malteaser!

Aww she's beautiful!!

Hope everything goes well today!!

misswex

Just wanted to add my good luck wishes, I hope everything goes well for the little one (she is super cute).

Please make sure to come back and let us know how it goes.

Oryx

She sure is the most precious little thing. Big hugs and warmest thoughts to you all today. Good luck and strength to you and your lovely family. x

takola

Ah She's gorgeous!! Really hope everything goes well today, We'll all be thinking of her.

Don't forget to come back and let us know how it goes Kaz!!

echosound

She's such a little dote! hope all goes well tomorrow for her, do post and let us know how you all got on

SarahSassy

Kaz she is a total dote. Hope all goes well. Will be thinking of you all.

SS

Kazobel

Hi Guys, bad news I'm afraid, they didn't go ahead with the plug, they performed the procedure but while it was in there they discovered that the hole was to big and there was only about a 30 to 40 percent chance that it wouldn't fall out and that would be really bad because it'd end up in her lungs so unfortunatly she needs open heart surgury, the plan is for Friday but that depends on there being a surgury spot, an available nurse and bed in the ICU etc but either way the specialist was in with us after the procedeure and said that he wants it sorted and she won't be leaving the hospital until it's done. It's basically gone from a non invasive procedure to full blown heart surgury and then a six week recovery period but at least we know now that she can handle the anasthetic so that takes some of the pressure off. She was awake early this morning and full of beans but she's still not eating so they may have to put her on something to prevent any further weight loss but that depends on what the specialist says today.

Crumble Froo

oh, im really sorry, kaz

she seems to be a fighter anyway, and hell, she's got plenty of love around her... she'll be right, just make sure and look after yourself and her mam, dont go working yourselves up too much, and take it day by day

Rattlehead_ie

Hey Kaz, sorry to hear /Hug and as Narco said, there seems to be plenty of fight in here and lots of love. Hope friday works out and well keep us updated.

Oryx

Another hug from me to you all. I will be thinking of you from now till Friday x.

Maple

Hey Kaz, so sorry to hear that. Thinking of you and your family. Mind yourselves.

DJ_Spider

My sincere best wishes for friday Kaz, you will get through it, you have come this far, don't give up now. {{{{{{{ H U G Z }}}}}}}

takola

I'm so sorry to hear that. Is such a scary thing for one so little. We'll all be thinking about you. Hope everything goes well. Do come back and let us know.

She def seems to be a little fighter so she'll be fine!

citytillidie

Aww sorry to hear that wishing her the best of luck for friday

Kazobel

Thanks guys, the hardest thing at the moment for both of us is the waiting around and uncertanty about if it'll go ahead or not on Friday or not, it's really frustrating because we know there's nothing we can do but wait and hope and it makes the days endless.

Dub13

Kazobel wrote: »

Hi Guys, bad news I'm afraid, they didn't go ahead with the plug, they performed the procedure but while it was in there they discovered that the hole was to big and there was only about a 30 to 40 percent chance that it wouldn't fall out and that would be really bad because it'd end up in her lungs so unfortunatly she needs open heart surgury, the plan is for Friday but that depends on there being a surgury spot, an available nurse and bed in the ICU etc but either way the specialist was in with us after the procedeure and said that he wants it sorted and she won't be leaving the hospital until it's done. It's basically gone from a non invasive procedure to full blown heart surgury and then a six week recovery period but at least we know now that she can handle the anasthetic so that takes some of the pressure off. She was awake early this morning and full of beans but she's still not eating so they may have to put her on something to prevent any further weight loss but that depends on what the specialist says today.

Hi,

I have been reading this with interest.My girl Shannon went for the plug procedure back in Oct,the same thing happened to her when they were in they discovered that the hole was to big to close this way.We were devastated we went from thinking its all over to all of a sudden been told she will need a much more complicated open heart surgery.

The we were given a date in late Nov/early Dec for the open heart surgery,and when we were just about to get into the car to head over to the hospital we got a phone call and told it was canceled due to a lack of ICU beds.This was another big blow its hard getting a 4 year old mentally ready for a long stay in hospital and then when you are just about to go its called off.

Anyway she finally got the open heart surgery done last Friday and it went without a hitch,the surgeon was very happy with it.We were told that should could be in for anything between 10 days to 3/4 weeks it all depends on how fast the child gets over it each child is different.I am glad to say some time today only 5 days after the operation I will be heading over to collect Shannon from the hospital.I spent last night with her and her recovery was remarkable even the doctors are surprised by it.

This procedure will be explained to you by more qualified people than me but from what I gather this is the most straight forward open hart procedure,its a bit daunting when they tell you its going to take 3/4 hours but this was explained well to be by the cardiac nurse.Basically any hart surgery it takes the guts of 2 hours to prepare the patient for the procedure,it then takes at least an hour and a half to tidy up again.So in this case its mostly preparation work and tidying up,the actual procedure they are going in to do could take as little as 15/20 min.

I hope this rests your mind somewhat,although all open hart surgery is a major thing this is the most straight forward operation these guys do.

After a long night with little sleep I hope this posts makes sense,if you fell you need to ask me any questions fire away as I no its nice to talk to someone who has been through this very recently.

Kazobel

Dub13 wrote: »

Hi,

I have been reading this with interest.My girl Shannon went for the plug procedure back in Oct,the same thing happened to her when they were in they discovered that the hole was to big to close this way.We were devastated we went from thinking its all over to all of a sudden been told she will need a much more complicated open heart surgery.

The we were given a date in late Nov/early Dec for the open heart surgery,and when we were just about to get into the car to head over to the hospital we got a phone call and told it was canceled due to a lack of ICU beds.This was another big blow its hard getting a 4 year old mentally ready for a long stay in hospital and then when you are just about to go its called off.

Anyway she finally got the open heart surgery done last Friday and it went without a hitch,the surgeon was very happy with it.We were told that should could be in for anything between 10 days to 3/4 weeks it all depends on how fast the child gets over it each child is different.I am glad to say some time today only 5 days after the operation I will be heading over to collect Shannon from the hospital.I spent last night with her and her recovery was remarkable even the doctors are surprised by it.

This procedure will be explained to you by more qualified people than me but from what I gather this is the most straight forward open hart procedure,its a bit daunting when they tell you its going to take 3/4 hours but this was explained well to be by the cardiac nurse.Basically any hart surgery it takes the guts of 2 hours to prepare the patient for the procedure,it then takes at least an hour and a half to tidy up again.So in this case its mostly preparation work and tidying up,the actual procedure they are going in to do could take as little as 15/20 min.

I hope this rests your mind somewhat,although all open hart surgery is a major thing this is the most straight forward operation these guys do.

After a long night with little sleep I hope this posts makes sense,if you fell you need to ask me any questions fire away as I no its nice to talk to someone who has been through this very recently.

Hi Dub, thanks for the reply I'm really glad to hear your daughter is making such a wonderful recovery and she's being released today. It's certantly eased some of my own concerns but I think due to her being so small for her age and having Downs our little one will be recovering for a few weeks at least so we've accepted that as a given. I was told the procedure last night and it does seem that the bulk of time is taken up preparing and cleaning up but even the discription was pretty frightening. The waiting and then knowing it can be canceled at a moments notice is the worst thing, it's like you can't prepare yourself to cope on the day because you don't know for sure when that day will be so all you're doing is constantly trying not to get worked up. I'm in work at the moment and I can't concentrate at all. I hope your daughter makes a swift, full recovery and thanks again for easing my mind some.

Dub13

She will be fine,and good luck to you all.

Another thing I forgot to mention is you will have a cardiac nurse assigned to you for the day,she will explain everything to you and what will happen and show you around ICU etc.But this most important thing about the cardiac nurse is she will ring you every 45min of so when the op is underway and explain what stage they are at,this helped us immensely.

I no its hard but the nurse told us once the operation is under way to try and leave the hospital for an hour or two,each min in the hospital can feel like an hour.We just went for a coffee and a walk and the nurse was ringing us as I said every once and a while.This helped the time move along a little faster and if you think you are up to it I would definitely try to get out for a bit,your girl will need you two when she comes around.

misswex

Its great to hear a success story, I hope your little one continues to thrive Dub13.

As for your little girl Kazobel, she sounds like such a little fighter and I will be thinking of ye all. *Huge hugs*

Jules

Kaz, im so sorry but at least it will be a permanent fix for her. Do you mind me asking what hospital she is in?

Kazobel

Dub13 wrote: »

She will be fine,and good luck to you all.

Another thing I forgot to mention is you will have a cardiac nurse assigned to you for the day,she will explain everything to you and what will happen and show you around ICU etc.But this most important thing about the cardiac nurse is she will ring you every 45min of so when the op is underway and explain what stage they are at,this helped us immensely.

I no its hard but the nurse told us once the operation is under way to try and leave the hospital for an hour or two,each min in the hospital can feel like an hour.We just went for a coffee and a walk and the nurse was ringing us as I said every once and a while.This helped the time move along a little faster and if you think you are up to it I would definitely try to get out for a bit,your girl will need you two when she comes around.

I knew we got assigned a cardiac nurse but I wasn't aware she phones every 45 minutes, that would certainly make a huge difference to both of us, 4 hours is a long time and the assurances that she's ok throughout would help alot. I'd agree that leaving for an hour or two would probably be a good thing but I doubt Hexx would be able to, she'd be in to much of a worried state and would have to go back but I'll sugest it to her. Thanks for all the info Dub it really has made a huge difference

Kazobel

Jules wrote: »

Kaz, im so sorry but at least it will be a permanent fix for her. Do you mind me asking what hospital she is in?

She's in the childrens hospital in Crumlin so she's in the best hands possible.

SarahSassy

Thinking about you all Kaz. She will be fine.. She is a little dote and no harm will come to her.

Sarah