Well surprise surprise we were there from 9am waiting around, Ethan got hot about 11am so had to strip him off and gave him the calpol although it hasn't had much effect.
Had an ECG and it was much longer than usual eg lots more paper? don't know what that means but they said it was ok.
They mentioned endocarditis but said it isn't at this stage, did a quick echo of his valves - don't know why as its a shunt hes had put in and said that was ok.so just viral and to see what comes back from Dr Spencer's sample on Friday.
I told him about the blue spells at the beginning and he said nothing then at the end i said so what am i to do if he does it again, he was shocked as if i hadn't told him but said well did he collapse???Well I don't know he went to sleep on my knee and i thought it was weird after only being awake for 45 mins but his breathing was ok..
SO I am resolved to phone an ambulance if it happens again as I'm at my wits end and feel like crying - a virus hasn't effected him like this before so why would it do it now?? his sats are allot lower and his breathing has got slightly worse... but he isn't sweating etc.... his eyes are red the whites of his eyes i mean, so I've been to the gp and got some drops to see if it clears up.
he hasn't been right since Jan and no one seems to be bothered..
they cant talk to each other..and although i seem pretty confident talking to his other professionals i don't seem to know what to say when i see the cardio.
Wednesday, 8 April 2009
Monday, 6 April 2009
Not again!!
So we had our outpatients appt this morning with Dr Spencer (respiritory) he was ok, then the next min he was scalding hot and navy blue...
so anyway we rang and asked if we could come early..they did his temp which by this time had come down to 37 with brufen and did his sats and they struggled to get to 70 then managed one 75 in th end we saw dr spencer, he wonders if ethan has intermittent aspiration and wants to do more stuff even tho theyve already done the bronch and barium etc....
they suctioned him and lots of red goo came out - he is obviously very sore..asked the cln to come down and they thought it could have been a plug of mucus but if he does it again to ring her...his sats came up to 77% by this time (they were 86% Friday!!) but they are ok with 77% so not too worried.
he came home and slept.. woke up played for 45 mins then just went really floppy and lay down he went even more navy - will post pic though it doesn't show it great as the flash kept turning him mega white!...
and sleepy his breathing was a little heavy but nothing major or i would've rang an ambulance. he had brufen again at 2.15 and although he cooled down it took him until 4.45 to perk up, was floppy sleepy lay on my knee just really out of it...Rang paddy and she has made an appt for wed morning, so in the meantime what do i do?! I cant ring an ambo and say er would u mind checking Ethan's sats please??
so anyway we rang and asked if we could come early..they did his temp which by this time had come down to 37 with brufen and did his sats and they struggled to get to 70 then managed one 75 in th end we saw dr spencer, he wonders if ethan has intermittent aspiration and wants to do more stuff even tho theyve already done the bronch and barium etc....
they suctioned him and lots of red goo came out - he is obviously very sore..asked the cln to come down and they thought it could have been a plug of mucus but if he does it again to ring her...his sats came up to 77% by this time (they were 86% Friday!!) but they are ok with 77% so not too worried.
he came home and slept.. woke up played for 45 mins then just went really floppy and lay down he went even more navy - will post pic though it doesn't show it great as the flash kept turning him mega white!...
and sleepy his breathing was a little heavy but nothing major or i would've rang an ambulance. he had brufen again at 2.15 and although he cooled down it took him until 4.45 to perk up, was floppy sleepy lay on my knee just really out of it...Rang paddy and she has made an appt for wed morning, so in the meantime what do i do?! I cant ring an ambo and say er would u mind checking Ethan's sats please??
Saturday, 21 March 2009
Too many angels
Tonight, I am sad to say there is another chd angel. Life is so unfair. My heart breaks (literally)for her and her parents who very bravely took the decision to withdraw care. Every time I hear of a new angel - whether I happen to know their parents in any way or not I lose a piece of my heart. Because I just cannot come to terms with it.
Since having Ethan, there have been lots of new angels gaining their wings. You know nothing of this world until it hits you smack bang in the face like a car crash.
Heart defects are the NUMBER ONE BIRTH DEFECT. The statistics were 1 in 120 births. That is higher than hyperthyroidism which is what they do the Guthrie test for - that is 1 in 10,000 yet they test EVERY baby for this. Is it too much to ask that we check every baby? I don't think so.
People don't understand the constant worry and battles that comes with our special children, is his colour ok? is his breathing ok? is he puffy? If I wake up before him and I don't hear him babbling - is today going to be the last day that I go in to my sons room to find him alive? who knows but I treasure every moment.
Any belief I had in god is well and truly out of the window, but in its place I have learnt to love and accept and what really matters in life. That and very big bags under my eyes ... LOL
Please, if chd doesn't affect your life - spare a thought for those whose life it does touch.
Rant over. Fly high princess xx
Since having Ethan, there have been lots of new angels gaining their wings. You know nothing of this world until it hits you smack bang in the face like a car crash.
Heart defects are the NUMBER ONE BIRTH DEFECT. The statistics were 1 in 120 births. That is higher than hyperthyroidism which is what they do the Guthrie test for - that is 1 in 10,000 yet they test EVERY baby for this. Is it too much to ask that we check every baby? I don't think so.
People don't understand the constant worry and battles that comes with our special children, is his colour ok? is his breathing ok? is he puffy? If I wake up before him and I don't hear him babbling - is today going to be the last day that I go in to my sons room to find him alive? who knows but I treasure every moment.
Any belief I had in god is well and truly out of the window, but in its place I have learnt to love and accept and what really matters in life. That and very big bags under my eyes ... LOL
Please, if chd doesn't affect your life - spare a thought for those whose life it does touch.
Rant over. Fly high princess xx
Friday, 20 March 2009
Good News!! No surgery as yet !!
LOL Paddy, Ethan's cardiac nurse came out to visit today. I was a little worried about him first thing as he didn't look to clever - but he perked up after his nap.
Paddy was over the moon with him and his oxygen saturation's were 82% so she feels it will be a few more months before he needs to go in for further surgery!! We had a good catch up it was lovely and he even gave her a kiss before she left.
wooooooooooo hoooooooooooooooo !!
Paddy was over the moon with him and his oxygen saturation's were 82% so she feels it will be a few more months before he needs to go in for further surgery!! We had a good catch up it was lovely and he even gave her a kiss before she left.
wooooooooooo hoooooooooooooooo !!
Friday, 6 March 2009
If you ever have to ask yourself "Do I need an Ambulance?" You NEED an Ambulance!!
All I can say is it is the really scary and the first time I have actually cried in front of anyone when ethan has been poorly..
He just woke up screaming and unsettled we gave calpol and it didn't work so Dean brought him down he was scalding hot, floppy eyes roling back in his head, and grunting.... so I phoned ward and said Iwas coming in rang a friend to take Josh.
We drove but shouldve phoned an ambulance half way there his breathing got very slow but still grunting and seemed to be stopping or forcing it if that makes any sense...
So I rang the kids ward and said I'm going straight to a&e (it would have meant a further 5 min walk to the ward). We got to A&E after a horrible panicky drive and the woman was asking us whats his name, phone no, GP - I said what part of cardiac and not breathing properly don't u understand! (that's when i started crying) bearing in mind I ran in with him in an open baby grow (too hot!) and he was obviously ill!
Through to resus and all the stuff........... did bloods, exg & chest x-ray they were OK but his oxygen saturations were down to 66% heart rate 170... really bad recession - very bad! so he needed oxygen. They gave him a subutimol inhaler and it seemed to help. So we were taken up to the ward.
He still wasn't right the next day pale mottled and some slight sub and intercostal recession (where the child is working hard to breathe and the chest is pulling in) and a tracheal tug so we were kept in again. and he is much better today so we are home now.
It was like a little reunion, my lovely friend Donna is in with lily and there is another freeman bod in!
NB I did apologise to the receptionist when Ethan was ok, to be fair to her she said she didn't hear my say cardiac, so can only presume it was my tonsillitis lisp(as i called it!) but when she saw his ng tube she realised..and took me seriously.
The last thing I would say for anyone who has a child with chd or other condition is to make sure you know all their baseline/usual information eg heartrate etc... fortunately I do but although I can remember all his medications I couldn't remember his exact dosages.. Think I may write up some index cards with the info on and put them in the change bags.
Oh and the cardiac nurse isn't coming out on Monday now due to all our excitement!
He just woke up screaming and unsettled we gave calpol and it didn't work so Dean brought him down he was scalding hot, floppy eyes roling back in his head, and grunting.... so I phoned ward and said Iwas coming in rang a friend to take Josh.
We drove but shouldve phoned an ambulance half way there his breathing got very slow but still grunting and seemed to be stopping or forcing it if that makes any sense...
So I rang the kids ward and said I'm going straight to a&e (it would have meant a further 5 min walk to the ward). We got to A&E after a horrible panicky drive and the woman was asking us whats his name, phone no, GP - I said what part of cardiac and not breathing properly don't u understand! (that's when i started crying) bearing in mind I ran in with him in an open baby grow (too hot!) and he was obviously ill!
Through to resus and all the stuff........... did bloods, exg & chest x-ray they were OK but his oxygen saturations were down to 66% heart rate 170... really bad recession - very bad! so he needed oxygen. They gave him a subutimol inhaler and it seemed to help. So we were taken up to the ward.
He still wasn't right the next day pale mottled and some slight sub and intercostal recession (where the child is working hard to breathe and the chest is pulling in) and a tracheal tug so we were kept in again. and he is much better today so we are home now.
It was like a little reunion, my lovely friend Donna is in with lily and there is another freeman bod in!
NB I did apologise to the receptionist when Ethan was ok, to be fair to her she said she didn't hear my say cardiac, so can only presume it was my tonsillitis lisp(as i called it!) but when she saw his ng tube she realised..and took me seriously.
The last thing I would say for anyone who has a child with chd or other condition is to make sure you know all their baseline/usual information eg heartrate etc... fortunately I do but although I can remember all his medications I couldn't remember his exact dosages.. Think I may write up some index cards with the info on and put them in the change bags.
Oh and the cardiac nurse isn't coming out on Monday now due to all our excitement!
Saturday, 28 February 2009
What a Week!
Gosh its been a funny week, Ethan has had a wheeze for about 3 weeks now it hasnt got any better although he hasnt been unhappy he is on phrophylatic antibiotics (since october to keep bugs away) and he has still caught this.
Its got worse over th last few days where i have had to give him calpol to make him comfortable... it seems to hurt him and he is now coughing.. - he has even been patting his chest now like i do to help him cough !
he is abit clammy and definately off his food we have started giving him half strength milk a couple days ago as he had diorhea and vomited a couple of times his wheeze is stronger and u can feel it when u hold him round his chest - if that makes any sense...sometimes it whistles rather than wheezes!!
Didn't want to go to our GP as they are worse than useless and are like rabbits in the headlights with Ethan!
Anyhow I took him a week ago last Monday and we got some amoxicillin, I rang our Cardiac Liaison Nurse who said yes get some AB's but also that she wants to come and see us about his next operation :-O !! So after a week on Amoxicillin which after a week had made no difference as you could still hear him wheezing across the room.
Just phoned GP again Monday - and he very sensitively told me it must be viral and it doesn't matter whats wrong with his heart if its viral and he is going to drop dead tomorrow there's nothing they could do !! But he said to bring him up which we did and even he said his chest is really really crackly and got given some new antibiotics Erythromycin. Tuesday Night Ethan was so ill we nearly phoned an ambulance, he was screaming for ages, really ill, chest pulling in etc.. but he settled after an hour.
Anyway, we have had this last week, fever, cold sweats, nose bleeds, a very very grumpy boy who isn't sleeping at night and constantly rubbing his head?! oh and yesterday an all over body rash (so after this many weeks I think we can assume its a virus!) and one very anxious tired mum !!
So by Thursday I'd had enough and took him to the Freeman to get checked by the wonderful Doctor Spencer.. they've taken bloods to check his immunity again as his immunogloblin is low and do an all round screen for other bugs.
OH AND ARGHHHHHHHHH AT PADDY THE CLN COMING OUT ON 9TH MARCH !!
Its got worse over th last few days where i have had to give him calpol to make him comfortable... it seems to hurt him and he is now coughing.. - he has even been patting his chest now like i do to help him cough !
he is abit clammy and definately off his food we have started giving him half strength milk a couple days ago as he had diorhea and vomited a couple of times his wheeze is stronger and u can feel it when u hold him round his chest - if that makes any sense...sometimes it whistles rather than wheezes!!
Didn't want to go to our GP as they are worse than useless and are like rabbits in the headlights with Ethan!
Anyhow I took him a week ago last Monday and we got some amoxicillin, I rang our Cardiac Liaison Nurse who said yes get some AB's but also that she wants to come and see us about his next operation :-O !! So after a week on Amoxicillin which after a week had made no difference as you could still hear him wheezing across the room.
Just phoned GP again Monday - and he very sensitively told me it must be viral and it doesn't matter whats wrong with his heart if its viral and he is going to drop dead tomorrow there's nothing they could do !! But he said to bring him up which we did and even he said his chest is really really crackly and got given some new antibiotics Erythromycin. Tuesday Night Ethan was so ill we nearly phoned an ambulance, he was screaming for ages, really ill, chest pulling in etc.. but he settled after an hour.
Anyway, we have had this last week, fever, cold sweats, nose bleeds, a very very grumpy boy who isn't sleeping at night and constantly rubbing his head?! oh and yesterday an all over body rash (so after this many weeks I think we can assume its a virus!) and one very anxious tired mum !!
So by Thursday I'd had enough and took him to the Freeman to get checked by the wonderful Doctor Spencer.. they've taken bloods to check his immunity again as his immunogloblin is low and do an all round screen for other bugs.
OH AND ARGHHHHHHHHH AT PADDY THE CLN COMING OUT ON 9TH MARCH !!
Friday, 6 February 2009
Life goes on
Its February already !! I cant believe it!
Ethan was in hospital last week after fitting, it was a febrile convulsion they decided but were unable to find an infection so we just had to mark it down to experience. I have always said Im just on this side of sane, this side of hysteria, and it just takes one thing to push me over!
This week I've learnt that no matter how angry at the world you are because your baba has chd - the world continues around you. Well, I knew that already Xmas came and went when Ethan had his first surgery and everyone was celebrating around us but now I **think** I feel more ready to be part of the world.
I feel like Ive been on autopilot for so long that I need to start and try to take time to enjoy our life. And not worry so much, He needs a family that can relax and have fun as much as we all do!
Paddy, Ethans Cardiac Liason Nurse wants to come out this month and assess him... to see if he needs to be booked in for a cardiac catheter.....arrrghhh... might give it a week or so before I ring I think !!!!
Ethan was in hospital last week after fitting, it was a febrile convulsion they decided but were unable to find an infection so we just had to mark it down to experience. I have always said Im just on this side of sane, this side of hysteria, and it just takes one thing to push me over!
This week I've learnt that no matter how angry at the world you are because your baba has chd - the world continues around you. Well, I knew that already Xmas came and went when Ethan had his first surgery and everyone was celebrating around us but now I **think** I feel more ready to be part of the world.
I feel like Ive been on autopilot for so long that I need to start and try to take time to enjoy our life. And not worry so much, He needs a family that can relax and have fun as much as we all do!
Paddy, Ethans Cardiac Liason Nurse wants to come out this month and assess him... to see if he needs to be booked in for a cardiac catheter.....arrrghhh... might give it a week or so before I ring I think !!!!
Friday, 16 January 2009
The Day I became a Heart Mother
The Day I Became a Heart Mother
One day my world came crashing down,
I'll never be the same.
They told me that my child was sick.
I thought, "am I to blame"?
I don't think I can handle this.
I am really not that strong.
It seemed my heart was breaking.
I have loved him for so long.
I will not give up on this child.
I will listen to your advice.
I will give my child any chance.
No matter what the price.
I will learn all that I need to help my child thrive.
I'll even use that feeding tube.
My child must survive!
Will he need a lot of therapy?
Will he gain the needed weight?
Please God, help me do this.
I will accept our fate.
When the monitors beep at night, it serves as my reminder.
How many parents would love that sound.
Tomorrow I will be kinder.
As another Angel earns his wings,
I run to my child's bed.
I watch him sleep for quite a while.
I bend down and kiss his head.
I cry for the parents whose hearts have been broken.
I look to You wondering why?
Oh Lord, I just can't know your ways....no matter how I try.
And yet, I trust you hold his life, and guide us through each day.
My mind says savor each moment he's here,
but my heart begs, "PLEASE let him stay"!
From pacing the surgical waiting room, to sitting by his bed.
From wishing for a good nights sleep, to learning every med.
From wondering, "will he be alright?", to watching him reach out his hands.
With every smile my heart just melts, despite life's harsh demands.
For all who see that faded line.
I look to them and smile
.You see my child is loved so much.
I would face ANY trial.
That scar I trace with my finger (It's the door to his beautiful heart).
God must have known how much I'd love him (Just as He loved him from the start).
A heart mom is always a heart mom.
Now wise beyond her years.
For those who have angels in heaven,
Our hearts share in all of your tears.
Every day I will try and remember,
I was chosen for him (and no other).
I will always embrace that beautiful day.......
When I became a "Heart Mother".
One day my world came crashing down,
I'll never be the same.
They told me that my child was sick.
I thought, "am I to blame"?
I don't think I can handle this.
I am really not that strong.
It seemed my heart was breaking.
I have loved him for so long.
I will not give up on this child.
I will listen to your advice.
I will give my child any chance.
No matter what the price.
I will learn all that I need to help my child thrive.
I'll even use that feeding tube.
My child must survive!
Will he need a lot of therapy?
Will he gain the needed weight?
Please God, help me do this.
I will accept our fate.
When the monitors beep at night, it serves as my reminder.
How many parents would love that sound.
Tomorrow I will be kinder.
As another Angel earns his wings,
I run to my child's bed.
I watch him sleep for quite a while.
I bend down and kiss his head.
I cry for the parents whose hearts have been broken.
I look to You wondering why?
Oh Lord, I just can't know your ways....no matter how I try.
And yet, I trust you hold his life, and guide us through each day.
My mind says savor each moment he's here,
but my heart begs, "PLEASE let him stay"!
From pacing the surgical waiting room, to sitting by his bed.
From wishing for a good nights sleep, to learning every med.
From wondering, "will he be alright?", to watching him reach out his hands.
With every smile my heart just melts, despite life's harsh demands.
For all who see that faded line.
I look to them and smile
.You see my child is loved so much.
I would face ANY trial.
That scar I trace with my finger (It's the door to his beautiful heart).
God must have known how much I'd love him (Just as He loved him from the start).
A heart mom is always a heart mom.
Now wise beyond her years.
For those who have angels in heaven,
Our hearts share in all of your tears.
Every day I will try and remember,
I was chosen for him (and no other).
I will always embrace that beautiful day.......
When I became a "Heart Mother".
Tuesday, 6 January 2009
Whats it like to have a child with CHD?
You passed me in the shopping mall...(You read my faded tee)
You tapped me on the shoulder...Then asked...`"What's a CHD?"
I could quote terminology...There's stats that I could give...
But I would rather share with you...A mother's perspective.
What is it like to have a child with a CHD?
It's Lasix,aspirin,Captopril....
It's wondering...Lord what's your will?...
It's monitors and oxygen tanks...
It's a constant reminder...to always give thanks...
It's feeding tubes, calories, needed weight gain...
It's the drama of eating...and yes it's insane!
It's the first time I held her...(I'd waited so long)
It's knowing that I need...to help her grow strong...
It's making a hospital...home for awhile...
It's seeing my reward...in every smile.
It's checking her sats...as the feeding pump's beeping...
It's knowing that there... is just no time for sleeping...
It's caths,x-rays and boo boos to kiss...
It's normalcy...I sometimes miss...
It's asking...do her nails look blue?It's cringing inside... at what she's been through.
It's dozens of call to her pediatrician...(She knows me by name...I'm a mom on a mission)
It's winter's homebound...and hand sanitizer...
It's knowing this journey...has made me much wiser.
It's watching her sleeping...her breathing is steady...
It's surgery day...and I'll never be ready.
It's handing her over...( I'm still not prepared...)
It's knowing that her heart... must be repaired...
It's waiting for news...on that long stressful day...
It's ...praying...it's hoping...that she'll be okay.
It's the wonderful friends... with whom I've connected...
It's the bond that we share...it was so unexpected...
It's that long faded scar... down my child's small chest...
It's touching it gently...and knowing we're blessed...
It's watching her chasing...a small butterfly...
It's the moment I realized...I've stopped asking...why?
It's the snowflakes that fall...on a cold winter's day...
(They remind me of those...who aren't with us today)
It's a brave little boy...who loved Thomas the train...
Or a special heart bear...or a frog in the rain....
It's the need to remember...we are all in this plight....
It's their lives that remind us... we still need to fight!
It's in pushing ahead amidst every sorrow...
It is finding the strength to have hope for tomorrow.
And no...we'll never be the same...It's changed our family...
This is what we face each day...This is...a CHD
You tapped me on the shoulder...Then asked...`"What's a CHD?"
I could quote terminology...There's stats that I could give...
But I would rather share with you...A mother's perspective.
What is it like to have a child with a CHD?
It's Lasix,aspirin,Captopril....
It's wondering...Lord what's your will?...
It's monitors and oxygen tanks...
It's a constant reminder...to always give thanks...
It's feeding tubes, calories, needed weight gain...
It's the drama of eating...and yes it's insane!
It's the first time I held her...(I'd waited so long)
It's knowing that I need...to help her grow strong...
It's making a hospital...home for awhile...
It's seeing my reward...in every smile.
It's checking her sats...as the feeding pump's beeping...
It's knowing that there... is just no time for sleeping...
It's caths,x-rays and boo boos to kiss...
It's normalcy...I sometimes miss...
It's asking...do her nails look blue?It's cringing inside... at what she's been through.
It's dozens of call to her pediatrician...(She knows me by name...I'm a mom on a mission)
It's winter's homebound...and hand sanitizer...
It's knowing this journey...has made me much wiser.
It's watching her sleeping...her breathing is steady...
It's surgery day...and I'll never be ready.
It's handing her over...( I'm still not prepared...)
It's knowing that her heart... must be repaired...
It's waiting for news...on that long stressful day...
It's ...praying...it's hoping...that she'll be okay.
It's the wonderful friends... with whom I've connected...
It's the bond that we share...it was so unexpected...
It's that long faded scar... down my child's small chest...
It's touching it gently...and knowing we're blessed...
It's watching her chasing...a small butterfly...
It's the moment I realized...I've stopped asking...why?
It's the snowflakes that fall...on a cold winter's day...
(They remind me of those...who aren't with us today)
It's a brave little boy...who loved Thomas the train...
Or a special heart bear...or a frog in the rain....
It's the need to remember...we are all in this plight....
It's their lives that remind us... we still need to fight!
It's in pushing ahead amidst every sorrow...
It is finding the strength to have hope for tomorrow.
And no...we'll never be the same...It's changed our family...
This is what we face each day...This is...a CHD
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