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.
Monday, 21 June 2010
Since Ethan stopped his oral antibiotics he has had a bad chest and chesty cough - not bad enough for him to go in more than once but so he sounds like a 90 year old smoker.
We have our appointment with Dr Spencer on Thursday about his chest and possible asspiration so I'm hoping they give us some answers.
At Ethans first outpatients since coming home they wanted to do a detailed echo to check his new diagnosis of hypoplastic pulmonary artery. But in true Ethan style he wouldn't let them. So we have to go in for a sedated echo and also bloods to check for infection as he has had temperatures on and off since we got out of hospital - not huge temps though so not a major concern (just a niggle!).
In general, he is doing well he has been napping and not eating huge amounts. But he is miles better than before the operation so thats good! Here he is in full England supporter mode!
Saturday, 19 June 2010
Friday, 21 May 2010
Ethans recovery is going well, we are waiting for an appointment for a sedated echo on the ward plus bloods to check he has no infection left over.
We had a lovely day at alnwick castle yesterday, where they filmed Harry Potter - just check out the pictures!
Thursday, 29 April 2010
Saturday, 24 April 2010
Thursday, 22 April 2010
Sunday, 18 April 2010
We should really have come home on Friday, but the Echo & Xray showed some plural effusion (fluid between the lungs and chest wall) Thankfully, it wasn't big enough to require any medical intervention and we just have to keep an eye on him.
I am so pleased to have my gorgeous boy home. He is such a strong boy. I want to thank everyone for their continued help and support - even if it was just a thought of us, everything helps.
Grandma grumps needs a special mention, she came up when she didn't have to just to help out and let me go home for a sleep. Thank you xx
Im going to try get a nice picture of him today so will post later.
Thursday, 15 April 2010
Monday, 12 April 2010
Sunday, 11 April 2010
Saturday, 10 April 2010
Friday, 9 April 2010
Thursday, 8 April 2010
Wednesday, 7 April 2010
Sunday, 4 April 2010
Saturday, 3 April 2010
He is doing well and we are trying to ween the vent. I have my info now so hope to be able to email from my phone. But just in case - this is the update thread on my favourite site for cardiac parents... and I have been updating my status on facebook - which is why I put the button on the top here!!
Thank you for your prayers we need them !!
Friday, 26 March 2010
The CLN has just rang, seemed like they knew I knew I was being fobbed off..
they are admitting Ethan MONDAY to the local ward for IV antibiotics, and surgery at the end of the week barring any emergencies - which I honestly wouldn't hold against them!
8am Monday morning at Treetops for us then.
keep your fingers crossed x
Wednesday, 24 March 2010
So of course I had to ring and check it with the Freeman and they said they wouldn't take him in with an infection. But I was to ring today and tell them how he was.
It had helped & he was 10 times better Tuesday and today, but they wont take him in for his IV antibiotics while he he is still on these oral antibiotics!! how backwards is that?!
I mean this will be his THIRD course of the same antibiotic, so as far as I can see it - he needs these IV antibiotics to clear his bad chest that he has had since November!
For starters we don't know how long he is to take them for, so I rang treetops the local kids ward and they said they would be happy with him just having 5 days with an ear infection especially as he is clearly much happier. They couldn't understand why the Freeman wouldn't take him in for his IV antibiotics.
The CLN rang back and said they wont discuss him again until next Wednesday at the planning meeting.
I wasn't happy, if they were planning on taking him in then I don't see why they need to wait a whole week just to discuss him again.
Anyone else starting to think they are taking the micky, and they never intended to take him in in the first place!! I cant ring them again cos I will seriously lose the plot.
Would the secretary know whats going on? I'm so tempted to ring and ask if they had a date in the first place!
I am soooooo angry with them ..I just feel like they keep moving the goal posts.
Oh and Deans mum & dad go on holiday 24th April for 2 weeks so I'm quite literally stuck if we aren't in and out by then. SO by my workings we need to be in by the 1st April to give them the 3 weeks they said. Or I have no one to look after Josh (my family live a 2 hour drive away, but would gladly have him).
I explained this to the cln and she just replied they have no facility for siblings... well tough he will have to come.
Wednesday, 17 March 2010
I had a melt down on the clns (in the middle of outpatients!) and got told off - but they did give me some news.
we are to go in at the end of next week for IV Antibiotics & surgery the week after.
They said my diary just showed everything that is normal for a child like ethan prior to surgery - I feel better knowing that they understand and obviously that I got my go ahead! I suppose that I felt fobbed off as I had lost my trust in them and thought that as they werent giving us a date we werent going to be in for ages and that it was as if they didnt beleive me,.... she wanted to pinch my sats monitor! but seriously she said I am making myself ill - which I know so I am going to make the effort not to panic all the time, breathe more and paint lol x
Thanks for your help and prayers, and if anyone knows a way of updating blogger via mobile I would appreciate some instructions so I can keep you all updated!! ... x
Sunday, 14 March 2010
She also said they wont touch him while he has a bad chest - I flipped as he has had it since November that's why he is having 4 days iv antibiotics before the op. what the hell else am I supposed to do.
Apparently they are re-locating ward 23 to ward 18 while they do refurb, Mr Hasan is away part weeks for the next 3 weeks and they are seriously taking the mick.
Paddy got an earful, for which I rang her back and apologised but I think she knows I'm at the end of my tether.. I'm just sick .. honestly I've had enough.....
Ethan has eaten eaten a packet of crisps and his cereal all day has no appetite, his cough is worse as is his chest even with two weeks high high dose antibiotics. 500mg per day (targeted) - its even worse today!
Oh, and the community nurse tells me to go through the GP when we have open access... sorry don't mean to rant!! x He has black hard poo today?? what is that all about??
To top it off, I took Josh to the GP re his constipation today and he has referred us to the paediatrician. I had decided I was going to speak to the gp and try get some tablets or something so tried to explain how I am and he said make an appointment of your own.. 2 weeks wait for me, to which I will probably end up cancelling as I don't have time - fgs I have been for other issues let alone anything else!
I just want to cry constantly x AND BREATHE!
Paddy left it, she was going to speak to Dr Spencer (respiratory) and Dr O'Sullivan (cardiologist) and ring me on Tuesday. SO lets see what they say then,
Thursday, 4 March 2010
I found this quote yesterday - " Finds her strength in her son's laugh, her happiness in his hugs & kisses and all the faith she needs to keep her going in his beautiful eyes." its so beautiful.
Ethan is so tired. He needs his op soon before he ends up as an emergency.
I don't pray. generally. But last night I got so worked up I felt the need to.. I don't know whether its just that I released my tension or divine intervention but I feel lots better, stronger today.
I left it as long as I could before I rang the cardiac liaison nurse this afternoon. Mr Hasan (the surgeon) is away until next Thursday so I'm to ring on Friday and hopefully we should get some idea of when he can go for his surgery.
I mentioned about his heart looking huge on his xray and she said it was and that he is urgent. Now I must trust that she is being honest in what she says and not fobbing us off!! Please keep your fingers crossed
Monday, 1 March 2010
So here we go again with another high dose of antibiotics, amoxicilin. They are still planning to admit him for IV antibiotics for 5 days before the operation.
The cardiac liason nurse is going to speak to them on Wednesday at the meeting to hopefully get a date.
He is tired now, knackered. He NEEDS this operation but I still feel like a train is hurtling towards us and there is nothing we can do to stop it.
And its not even as if this will be it - one last op. to 'fix' him. We have to endure this again 2 or 3 more times before he is 20 according to the surgeon.
Sorry, I don't mean to feel so sorry for myself!! I just feel as if we get on an even keel then here comes the damn train again - Im so angry. Im so sad. Im so angry with life. I love my son - I dont want to hand him over to anyone.
Update on AlexaPlease pray for Alexa she now has complete heartblock and needs more surgery tomorrow to give her a pacemaker.
Saturday, 27 February 2010
Please send your prayers to Alexa (http://www.withallmyhearts.blogspot.com/
We have had the appointment with the respiritory specialist. He thinks that Ethan is aspirating food/liquid into his lungs when he swallows and this is the cause of the constant bad chests. They took an xray and it showed no pnemonia which is good. And they took some secretions to grow and see what antibiotics he needs.
They are talking about admitting him for 5 days IV antibiotics immediately before surgery.
So now, we are just waiting for the call - is it wrong that I dont want them to ring? they said the ward has been closed to scheduled surgery as they have had so many emergancies and transplants. But did say sometime in March. How scary is it that there are more and more of us everyday? people starting their chd journey, their lives turned upside down. I really feel for them.
Sending love to everyone and praying for those we know are in hospital - alexa and zeb xx love Sam x
Saturday, 13 February 2010
I have been making cards to sell at work - have a look at the Valentines ones.
http://handmadewithlovedurham.blogspot.com/I found some great stamps that say Happy Hearts Day so I am planning on making some specialist cards for all the chd kids when they celebrate their heart day. If you want one let me know!!
We are still waiting for Ethans appointment with the respiritory specialist ahead of his operation.
Here is another picture from when we went bowling last week.
Happy Valentines !! xxx Sam & boys
Wednesday, 3 February 2010
They are also doing it now before he starts school as apparantly they are starting to do them sooner so he can get a good few years in school b4 his next op. We are looking at 2-3 more operations after this to get him to his 20's after that they dont know as they dont have any figures for people beyond 30-40 year old. But the likelyhood is that he will need more to correct leaks etc.
Its an all day operation and he has done 10 rastelli's in his career - he said it is a very rare op. but that all patients that have had the op are still with us!
there is a 10-15% risk - (a moderate risk he said) and 4-5 days ICU and 10-15 days on the ward.
Thats a hell of alot longer than i thought it was:confused: We need to see Dr Spencer (the respiritory doc that discharged us) to get his chest sorted as he is really wheezy.
He took my mobile number and I have to wait for a phone call. So now Im waiting and I think its starting to sink in.... x
Sunday, 24 January 2010
Finally!! we have been given a date for the appointment with Mr Hasan - Ethans heart surgeon - it is on 3rd Feb to discuss his surgery. Keep everything crossed!!x they say they have to do the surgery by April so not long now!
On a positive note, Ethan finally figured out how to say his name properly rather than saying Yi Yi - god knows where that came from!!
I also thought it was about time to show you a recent picture of Ethan! that and the fact that I realised the little picture icon allows you to upload them haha
Take care of yourselves xxx