Diary of a Cardiac Mummy

Sorry We havent been around

2011-08-02T02:51:00.001-07:00

Really sorry that we havent been around, alls ok, but life takes over! going to update today xxx lots of love and I hope your all well xxx

Pink heartline t shirt

2010-12-07T06:31:00.001-08:00

Heartline t shirts

2010-12-07T06:29:00.001-08:00

Appointments

2010-06-21T09:29:00.000-07:00

Sorry I haven't updated for a while, things kind of take over.

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!

High Calorie Foods

2010-06-19T09:32:00.000-07:00

These are the high calorie shakes that Ethan gets on prescription - ask your dietician about Peadisure, or Calogen. You can also get additives to put in their drinks.

High calorie shakes

2010-06-19T09:31:00.000-07:00

I found these high cal milk shakes in tesco extra thought you might like them . They do them in strawberry choc and banana x

A Lovely Day!

2010-05-21T07:10:00.000-07:00

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!

Come in the doctor!

2010-04-29T07:56:00.000-07:00

Ethan and josh have been playing doctors today. I must say mr potato head has been a very good patient! I on the other hand took some time out and went to see my friends at the craft house. They are such amazing friendly people. I can see why the studio is always full! X x

Feeling better!

2010-04-24T06:45:00.000-07:00

Today the sun is shining and ethan is making the most of it! He is still very wobbly and has a fear of people he doesn't know but he is getting there slowly. He has lost weight. He is now only 10.7 kilo's so hopefully he will put that back on soon x

Raising awareness of chd

2010-04-22T07:00:00.000-07:00

Here is story that was run in the evening chronicle today about ethan.

We are home!!

2010-04-18T03:55:00.001-07:00

Wow what a week! We went from sepsis on Sunday to home this Saturday!!! crazy - it shows how strong my wonderful boy is.

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.

Nearly happy?

2010-04-14T23:16:00.000-07:00

The magician came yesterday. And got a small smile on the morning. We think he needs two weeks of iv antibiotics according to micro biology. I'm also asking for prayers for laura, she went for transplant monday. She is critical but stable. And for kodi, just a baby but has sat on the berlin heart for months, she had a transplant yesterday! Xx

Fluid resus - septic again!

2010-04-14T23:12:00.000-07:00

Well what an eventful few days. He went up at 2pm to get a line into him and they ended up having to do full fluid resus on him. He became unstable and they needed quick access so had to put needle's into his bone marrow to give him fluid and drugs. They then managed to secure his femoral leg vein. So, he didn't want to come off the ventilator. A half hour procedure became 2.5 hours for us to see him. We went in and his vent tube was coming out of his mouth, they'd had to ventilate him quickly. They had jelly on his eyes - which as you can see from his picture he had a reaction to. They put him on two very strong antibiotics. He was septic (again). He decided after an hour he didn't really like the tube in his mouth and vomited everywhere. I'm ashamed to say it was too much for me. I had to leave him with his daddy. I've never cried seeing him in picu but for some reason the thought of them going into his bone, the jelly over his eyes as he was trying to open them and him vomiting was just too much. Needless to say if they'd have watched and waited like they wanted to originally then it could have been a very different story. So that was another night in picu! Tuesday he lay in bed all day not happy. Yesterday afternoon we gave him a dose of codene to see if it helped him out of bed. I'm glad to say he was like a different child. We went to the play room, he played laughed and ate for the first time in two weeks :) thank god.

My poorly boy

2010-04-12T05:25:00.000-07:00

Ethan is going upto picu at 2pm to have anesthetic to get a line into him. They tried last night but were unable to get access. He has been spiking temperature's all day. Going upto 39. He weighed 10.9 kilo. So has lost weight too, but i'm not to worried about that. Praying for our friends who got a call for a heart hope its suitable x

Spiking temperatures :(

2010-04-12T02:01:00.000-07:00

Ethan has been spiking temperature's since his neck line came out yesterday. Cant get bloods to check for infection. Peripheries shut down. Just got to watch and wait. Neck line was sent to check for bacteria anyway so result should be back tonight or tomorrow. Also Praying for a very brave girl. She is waiting for a heart and has had a phone call this morning. Still waiting to see if its good enough x :)

2010-04-11T08:44:00.001-07:00

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Ethan's neck line out. But gave me a fright. Went shakey and blue. Think it was bacteria on outside of his neckline entering blood. Spiked at 39 but had brufen and has come down x thought i was in for a re run of the septacemia last year. X

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Has a very tired boy today

2010-04-10T04:18:00.000-07:00

Ethan has been very tired today and yesterday. He is getting his drains and pacing wires out today. And his central line needs to come out tomorrow as its been in so long there is a risk of infection. If his lft's and clotting come down again tomorrow then he wont need another line in but if not they will need another way of getting his pavolex into him x

Out of bed!

2010-04-09T06:36:00.000-07:00

He was up and out of bed again today, here's the proof! Captopril to be increased and melranone weaned. Still on the pavolex for his liver. Still got the line in his neck to take bloods, they will need to take that out sunday at the latest. drains still draining but is reducing. Slow and sure he is getting there. Spoke to his respiritory consultant today. He wants to see ethan in a few months and if he still thinks he is aspirating then they would be looking to stop all oral feeds. This is such a blow. Mainly because we worked so hard to get his ng tube out, if they'd have wanted a peg then it wouldn't have been so bad. But to see this child who has come so far put back would really be ashame. So we are keeping our fingers crossed. Love to all x

2010-04-08T09:02:00.000-07:00

Hide & seek hospital style! Can you spot the difference? His 02 is off! He is maintaining his sats at 94 >

2010-04-07T01:37:00.000-07:00

Ethan seems much happier today. Mum changed his dressing yesterday, they'd been quite itchy. Mums friend alison brought him this bear which he has been cuddling and patting his back. Wont let go of his peppa pig balloon either! Still waiting for ward round but milranone reduced a tiny bit so thats a step in the right direction!

Up and at em!

2010-04-07T00:09:00.000-07:00

Well we got him up and out of bed today. He is still very sore. Drains still draining. Lft's and clotting still not sorted- they bruised his liver during surgery. He is still on melranone for his heart function and parvolex to help his liver heal. Along with the morphine. Though we have been able to reduce it. Hopefully drains out soon, but i dont think they will come out till his clotting is sorted and that means his liver needs to get better, keep your fingers crossed! X x love to all and hope everyone is well x x sam

2010-04-06T02:05:00.000-07:00

Seems more settled today don't you think!

2010-04-04T00:54:00.000-07:00

Ethan's new sats !

Ethan yesterday. So so sleepy feel asleep with sponge in his mouth.

2010-04-04T00:50:00.000-07:00

Ethan day one post op.

2010-04-03T14:59:00.000-07:00

Ethan just after surgery. Rastelli operation

2010-04-03T14:56:00.000-07:00

Its Done!

2010-04-03T00:44:00.000-07:00

Im really struggling to get online, no computer access at the hospital. He had the rastelli, he has had trouble with clotting. 2 units of blood and 2 units of clotting factor yesterday and still losing 40mls per hour. So they decided he needed to be taken into theatre and ventilated again late last night. He was in for just over an hour and the surgeon has said it was from an old adhesion

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!!

http://heartline.org.uk/forums/showthread.php?p=481798#post481798

Thank you for your prayers we need them !!

Well, looks like the 2ND email worked

2010-03-26T08:57:00.000-07:00

(fingers crossed behind my back!)

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

Spoke to soon :( Welcome to the flippin NHS

2010-03-24T13:21:00.000-07:00

Ethan was spiking a temperature over the weekend and turned out he had an ear infection. We took him to the out of hours gp who said his ear was dull & prescribed us a very wrong dose of amoxicillin (1500mg per day! :-0 !)) Got it checked and he is to have 125mg x 3 daily.

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.

We got the go ahead!!

2010-03-17T13:50:00.000-07:00

We saw the respiritory registrar today, she said his chest was clear - I still disagree.

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

No Further Forward

2010-03-14T12:48:00.000-07:00

I am going to end up having a nervous breakdown I can see it coming. I rang on Friday. Jacqui (the cardiac liaison nurse that told me to ring her on Friday) wasn't in. So I rang Paddy (the other cln)and she said that she didn't know why I was told to ring back Friday. Anyway she said its going to be weeks & weeks!

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,

Faith

2010-03-04T13:38:00.000-08:00

Firstly, I wanted to say thank you to those of you that are keeping us in your thoughts. I find I am writing more and more - its quite theraputic.

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

Test Results Back..

2010-03-01T13:13:00.000-08:00

Oh I feel sick, Im sick of this waiting. I rang today to find out if anything grew from the samples of yuck (lol) they took. They have grown the same bugs that he has struggled with before H-Influenza and Strepptacocus Pnemonae. Not sure of the spelling tho!

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.

Respiritory Appointment - Check

2010-02-27T02:19:00.000-08:00

It is slowly dawning on me the seriousness of Ethans operation. He has had Open heart surgery before - but this is major. Ethan's heart twin Alexa has just had her rastelli, and viewing her blog opened the floodgates. Im so frightened its untrue.

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

Waiting.... Feb 2010

2010-02-13T06:50:00.000-08:00

Just a quick post to wish everyone a Happy Valentines Day! this month is CHD awareness month so we have been working hard trying to raise awareness.

I have been making cards to sell at work - have a look at the Valentines ones.

Here;

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

Rastelli vs Nikaidoh

2010-02-03T04:36:00.000-08:00

Have been to see Mr Hasan this morning regarding his op. He said they hope to do the rastelli but it could depend upon a few things and until they open him op:( they wont know - but they will either do that or the nikaidoh. They did an echo to check him over.

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

Surgeons Appointment

2010-01-24T14:28:00.000-08:00

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

Poem; My Life Yet To Come by David Moore - Fellow Heart Parent

2009-12-31T07:21:00.000-08:00

My days were numbered from the very start

I fought for every breath due to my heart

My PDA closing I started to gasp

Just trying to breathe became such a task

The medicines they worked for a couple of days

But my heart still beating like I was running a race

It was beating so fast it was wearing me out

My heart was failing there was not doubt

My parents were worried, distressed, and confused

The tears now flowing due to the news

Tomorrows the day I go under the knife

I'm not even two weeks and fighting for my life

My lactic's were climbing and my function so poor

I had not the energy to play on the floor

I'm feeling so weak I just want to sleep

Something my mom is watching is starting to beep

I can hear them talking but just don't understand

I am still comforted by the warmth of her hand

The tone in her voice as she started to speak

Something about Jesus and my soul to keep

I have my eyes closed but I still see a light

I'm am very little but I know something's not right

I hear my mom cry as I took my last breath

But I am to young fear this thing they call death

The first thing I saw when I reached towards the glow

Was the figure of a man that for some reason, I know

He wrapped me in his arms and I felt so safe

I reached up to him and I touched his warm face

He spoke so softly and as not to startle me so

He told me he loved me and was letting me go

He told me a story of my life yet to come

That one day my living would be witness to some

I don't know why and I still can't explain

But I opened my eyes when I felt a sharp pain

I took a deep breath and I started to cry

I looked up to see mom with a tear in her eye

Still hooked to wires and lying in bed

For some reason I'm stronger and wanting to be fed

My parents don't know it but I saw God that day

He gave me more time to frolic and play

God has his reasons that some live and some die

What some parents have to endure leaves a question. Why?

I know it's not fair but I don't question the choice

I am a witness for him and I still have a voice

My heart isn't normal but it's perfect you see

Because without it there's no story, no poem about me

I'm one of Gods miracles a testament to his grace

I was only a week old but I got to touch his face.

Happy Christmas & New Year!

2009-12-31T07:07:00.000-08:00

It was eventful (it wouldn't be Ethan if it wasn't!) We had our lunch at the Brown Horse at Tow Law (Durham - it was divine!) and we were stopping over.

On Tuesday I took Ethan to the gp as the last well over 4 weeks we have noticed his breathing is very quick - over 40resps he is working harder eg his shoulders are moving up and down alot and his tug is worsened. He heart seems to be doing 10 to the dozen He saw dr leonard for a check a couple of weeks ago and she said his chest was clear although noted his resps etc were up.

He has had constant temperatures which we are attempting to keep down with calpol, a cough, runny nose (gp said fruity cough and rattly chest lol) but his chest is clear?... he is grey and sometimes navy. He is now off his food and intermittant diorhea. Generally he is up and down, knackered one min perked up the next.

That morning, he had no energy, we were holding his head up etc... he refused breakfast, but had a little dry cereal in the end - then perked up by 10am! He has given us some amoxicilin to start if he gets any worse

I think its probably as he had his s.flu jab on 13/11/09 he was alright for a week or so then started with all this.

SOooooooooo, he had been GREAT on Christmas day, eaten loads absolutely fine no problems at all - no reason to be concerned anyway. Ethan was sleeping and we were in our room, when he started grunting in his cot. I picked him up and he was navy started being really jerky but rigid legs etc... floppy not happy at all. So I rung 999. It took an age for them to arrive - but we were in the middle of nowhere and it was snowing ALOT!

Ambulance drive from tow law took half an hour and was awful in the snow and think we knew more than they did they looked very young! he wouldnt let them touch him was histerical...coughing up frothy stuff, but at least he was responsive! Within half an hour of being in and having a little 02 he was ten times better... very very strange.

We are home we came out at 1am as he was much better didnt see the point in stopping in and wouldnt have got any sleep. They can see changes in his lungs and a small amount of consilidation but dont think its pnemonia, gave us some AB's . Didnt sleep as typically, as soon as he was asleep in his cot again - he started grunting?! so pulled him in with us where he was more upright and he seemed more settled.

Drive back to Tow Law very hairy in bleaching snow... I hope we aren't in for a replay tonight though as he is still poorly and we had to ring for another weeks antibiotics.

SO I just wanted to wish everyone a very Merry Christmas and all the health and happiness for the New Year - lets hope this year is a good one.

Oh and btw we are still waiting to see the surgeon about his next surgery but should get a date soon xxx love to everyone x

Catheter 10/11/09

2009-11-11T08:18:00.000-08:00

Thank you for thinking of us xxx We are home today and tbh feel very frustrated. He went down for catheter we left him on the table:( at 11 and he didnt come out until 2! not back on the ward until 3 I think they were having a few problems waking him up - said he could sleep for england!

He came down onto the ward with no o2 which was good. They did the cath an endoscopy and angiogram.

Cardiologist came back down and said everything was as expected. Nothing critical and asked how quick would I like the operation for him? I said tomorrow because of the way he is. He said we are looking likely in the new yearbrickwall surely its unfair to leave him the way he is?? puffy tired etc.

The trouble is, he is too little to do the rastelli and they would like him to gain weight - but he has gained 0.05 kilo in two weeks! I asked about putting another shunt in as I was told previously that was what they were going to do. And he said well i suppose you could put another very small shunt in...

so we just have to wait.

Didnt get much sleep last night as his monitor kept going off his heart rate dropping to 71 and sats sitting at 72 ish... but no the nurses never bothered. So im wondering if 71 is a normal sleeping heartrate?

On the other hand I am feeling very lucky as there were two little boys in hospital awaiting transplant. One of which was very very went on the berlin heart yesterday so I am thinking and praying for them both that they have the strength to wait xxx

Cardiac Catheter

2009-11-08T11:18:00.000-08:00

Tomorrow we go into the Freeman Hospital at 3pm for Ethans Cardiac Catheter on Tuesday.

The catheter will check his plumbing so to speak and then they will decide what surgical route to take next.

Fingers crossed that they have a bed for us.... Im so nervous I could be sick.

Still waiting!

2009-10-12T11:47:00.000-07:00

We were told Ethan needs to have a cardiac catheter for them to check whats happening inside his heart. We are still waiting for the appointment to come through - no suprise there then!!

We should have had the date last week but nothings arrived as yet...

More Surgery

2009-09-28T11:13:00.000-07:00

Ethan definitely needs further surgery, so its just a waiting game to go in for a cardiac catheter and then decide where we go from there.

On the plus side, I have posted at the side a link for some pictures we have had taken. You can see the difference cant you! we are so so proud xxx

Just a quick note

2009-09-15T13:07:00.000-07:00

as my computer battery is not good haha.

Ethan has been tired breathless etc so we have an appointment at the Freeman on Monday to see if he needs his next operation.

keep your fingers crossed x

Going Well

2009-06-29T12:12:00.000-07:00

Sorry its been such a long time since I updated. Ethan has been without his NG tube since the last post and is doing well. We could do with better fluid intake but hey he is putting weight on.

He was weighed on Friday gone and was finally 9.5 kilos which is 20lb 9oz in old money ;-) he is just going into his 12-18 month tops ((finally at 21 months!)) but they are still very big - we are just finding he has gone very long and the 9-12 don't cover him properly.

This weekend gone, we have been to Rochdale and got a great welcome at The Royal Oak in Littleborough who did a 12 hour darts marathon, raffle etc in aid of the Children's Heart Unit Fund - the ward at the Freeman hospital where Ethan has been and will be treated. It was arranged by my wonderful sister and brother in law (I love you both).

I can honestly say, I have never met such a wonderful group of people. Considering they don't know us personally to have been so generous with their time - never mind their money I was so overwhelmed I had to go to the loo for a little cry.

I wish I could have put them all in my pocket and have taken them home! so lovely.. will definitely be back for a night out again soon with our new friends. Needless to say I was very much worse for wear on Sunday morning BTW if any of you guys read this - make sure you post and say hi!

Will post here to say how much was raised when we have a total figure but we did over and above what we thought. Oh and pictures will hopefuly be up soon too.

ALSO IT SHOULD BE IN THE OBSERVER THIS WEEK - NOT SURE WHEN

love Sam xx

So far so good - ?!

2009-05-13T10:58:00.000-07:00

Well its been a week and a half and he is still doing well. He was weighed yesterday and as put on 100grams which is good. Food wise he is eating but the fluids aren't so good. So the tube may go back down for fluids only.

A bit of a bummer but the last thing we want is for him to get dehydrated. We have booked ourselves a little holiday to Lincolnshire so looking forward to that and we have just had grandma, Auntie Lisa and April to stay for the weekend - which was great. Was sad when they went home though!!

Oh and I passed my theory test on Saturday!!! one step closer to Independence !!

Yay !! Ethans NG Tube is out!

2009-05-07T13:10:00.001-07:00

Well, what can I say. I think Ethan has had a bit of a growth spurt. And he has been eating so well that we decided that if he pulled out his ng tube we would leave it out.

He pulled it out last Sunday and so far he is ok. He is eating well, but the fluid intake is not great. So we are getting him weighed tomorrow and will take it from there. Not sure what we will do if he has lost weight as he was previously getting one bolus milk feed and one bolus water feed.

Will keep you posted - but I'm such a proud mummy. Last time we did this Ethan was very poorly from the lack of food etc so it is one step at a time.

The other thing I wanted to say, is thank you to everyone who has commented and supported us throughout the last month and last two years. We greatly appreciate everyone who thinks of us and your words and kindness mean alot.

When I can figure it out I will post new photos! I promise.

No more answers?!

2009-04-08T07:27:00.000-07:00

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.

Not again!!

2009-04-06T13:30:00.000-07:00

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??

Too many angels

2009-03-21T14:01:00.000-07:00

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

Good News!! No surgery as yet !!

2009-03-20T12:19:00.000-07:00

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 !!

2009-03-06T11:23:00.000-08:00

If you ever have to ask yourself "Do I need an Ambulance?" You NEED an Ambulance!!

2009-03-06T10:04:00.000-08:00

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!

What a Week!

2009-02-28T03:39:00.000-08:00

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 !!

Life goes on

2009-02-06T12:17:00.001-08:00

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 !!!!

The Day I became a Heart Mother

2009-01-16T14:36:00.000-08:00

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".

Whats it like to have a child with CHD?

2009-01-06T10:27:00.000-08:00

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

Welcome to Holland - a letter to my son

2008-12-03T08:52:00.000-08:00

Let me take you back to October 2007 a night that changed our lives forever.....

Our Saturday night was great, we'd been at a Halloween party and stopped over – little did we know that you had other ideas and wanted to join in!! You were born at 03.40am on Sunday 28th October 2007 after a 90 min labour! I was in shock but you were perfect! Quiet as a little mouse!

The next day we were going to be discharged when as a check they do on all newborns they put an oxygen saturation monitor on your feet (they do this to all newborns at UHND). With the theory that if the oxygen levels in your feet are OK, then your heart is pumping correctly. Ethan's saturation's were 72% out of a normal 100%.

They tried 3 different monitors before they decided they needed to call a paediatrician. He came and took you away with the promise that they would either bring you back or come and get us.
The midwives kept coming in and patting my back going are you ok? I knew then there was a problem but no-one was saying anything. They kept doing it and the more they did it the more irritating it was. The more I worried.

Eventually, the consultant came back with the other paediatrician. long faces. not good.
They explained that you had Transpositional Arteries, that the arteries going into the heart were the wrong way round and the blood with oxygen in from the lungs, instead of going round the body was just going back to your lungs. Eh? We could see you in ICU if we liked, I can honestly say I have never been so frightened in all my life. Daddy stayed with you, I couldn't stand seeing you like that I thought I was going to collapse in the heat.

They'd rang for the ICU Paediatric Transfer Team to come from Middlesbrough to take him to the Freeman Hospital in Newcastle....the freeman what?! where?
Daddy decided to drive - a decision I wasn't pleased with at the time but turned out good as we were able to concentrate on other things.

It was teatime, RUSHHOUR, GET OUT OF OUR WAY! don't you stupid people know we need to be with our little boy....every blue light set me off crying wondering if it was you – had something happened on the way?...

When we arrived they brought us to see you in the nursery you were crowded by doctors..doing what we now know as an echo..they then took us to a private room and explained that there was no quick fix. You had 3 major defects not just one. Bang, all at once our perfect family was over.
The parents on the ward with their children were a big support that night, more than they know I think. They'd been there and were able to reassure us that you were in the best place.

We left the hospital reluctantly at 10pm...and got home to a house full of baby things. That wasn't right..where was our baby, Ethan should be here. We cleared it all away, not really
knowing exactly what the future held for us as a family.

We were woken at 1.45am with a telephone call from the ward. Explaining that you had had a problem with your heart rhythm during the night and were being transferred to PICU, there was a chance that when we came in you could be ventilated as they had to give you a medicine to try bring it under control. She assured us that you were ok and that there was nothing we could do and we should get some sleep ready for the next day.

We tried. We got up and set off at 7am to make the 1.5 hour journey back to the hospital through the rush hour. I think if I could've bought a pair of Dorothy's red shoes then I would !
Looking back we have been thrown into this world, where the baby's & children are wonderful angels on earth. Not a day goes by where I don't worry about you – are you bluer than normal, is your breathing ok... and you just smile, laugh and get on with it.

The mums and dad's amazing – there's an understanding between us, You gain a huge amount of compassion and empathy. Every time one of us is dealt a blow we all feel it, every time we gain an angel a little piece of our heart is taken with them.
I think it was harder for us than it was for Ethan, My beautiful brave boy with his big smile. You don't know what the future holds. You have to carry on regardless. I can't believe your going to be one soon! My big brave boy – my little hero. On our first night in hospital with you a mum told me that special baby's need special families. I guess that's us. And we wouldn't change a thing.

WEDNESDAY, OCTOBER 31, 2007 In October 2007 Ethan was born and he was in the Freeman hospital (Newcastle) for exactly 6 days when he was born. He had a balloon septostimy at four days old, not such a big thing now but at the time it was massive......... they'd told us that you didn't need surgery yet... then they came to see us one morning and they had decided that you definitely needed this septostimy. The cardiologists and surgeons had decided to perform an operation called an Arterial Balloon Septostimy. This would keep the duct that all newborns have in utero to bypass the lungs (that aren't in use) open. This would allow the oxygenated blood to pass through the hole in the top two chambers and also the VSD (the hole in the bottom two chambers) and therefore be pumped around the body. It would also allow you to grow and put on weight before they did another palliative operation. They took you down to the operating theatre at lunch time My heart broke as I left you on the operating table, he held my finger so tight while he was being anesthetized I nearly passed out - his arm swelled up like Popeye because the cannula slipped - it was awful. Thankfully all went well and you were back on the ward again after 3 hours (the longest of my life!) I spent the next couple of days holding your arm up to try let the fluid drain out! I even managed to get a bit out of the hole where your cannula had been - ha ha

THURSDAY, NOVEMBER 01, 2007 11:13 AM, GMT Dr O'sullivan, your cardiologist explained to us that as you grew bigger the thing currently saving your life – the Pulmonary Stenosis (narrowing of pulmonary artery leading to your lungs, therefore keeping pressure down) would cause you to turn blue, gradually as your lungs could no longer keep up with the demands of pumping the blood through the narrowing. You would need another operation called a BT Shunt, they would put the shunt into your heart. Attaching it from the artery in your right arm to your aorta. This would allow further oxygenated blood to go to your lungs and then be pumped round your body. That was a lot to take in.

FRIDAY, NOVEMBER 02, 2007 11:17 AM, GMT Good news they were just keeping him in until he was stable on the drug for his arrhythmia's and then we could go home !! Joshua and Nana came to see you today it was lovely. YAY!!

SATURDAY, NOVEMBER 03, 2007 11:21 AM, GMT Another day on the ward, by this time we feel like old hands! our confidence in the hospital has grown and we have met the social worker and cardiac liaison nurses. We can go home tomorrow! Wonderful!

SUNDAY, NOVEMBER 04, 2007 11:23 AM, GMT We took you home today, it was a wonderful feeling!! At the same time we were very anxious, what if something happened? What do we do? We watched every little movement - you even came home without a naso-gastric tube like most cardiac baby's come home with.... you fed with the bottle, it took a long time but you managed.

SATURDAY, NOVEMBER 10, 2007 11:25 AM, GMT We settled down to life at home with Joshua, Daddy went back to work. We had a few little wobbles where we worried but nothing major! The home care nurses were coming in and all was well. Sats 80%'s

TUESDAY, DECEMBER 18, 2007 11:27 AM, GMT Today we rang the CLN, You were very blue and your SATS had been around 68-70% for 3 weeks now. When I think your ears, nose, lips, fingers were blue. You were also quite grumpy and I couldn't figure out why. So we took you to the ward, they said you were pink. Obviously they are used to dealing with very very blue babies!! When they did the echo, I was right the pressure in your lungs had increased and you needed your operation. Blimey!

MONDAY, DECEMBER 24, 2007 03:04 PM, GMT Its here !! we got bumped from first on the list to lunch time as an emergency transplant came in. Poor thing wasn't allowed anything to eat or drink, but you didn't really have the energy to complain. Though I walked miles back and forward on the ward to keep you happy in the silver cross. Eventually they were ready for us, we wrapped you in your blanket and walked up to theatre with you in my arms...I pinched every last cuddle and kiss I could before you went into theatre..I cried so much I set the nurse & Grandma off! Oops Mr Hasan was your surgeon. We left you in his capable hands. Can't imagine that he'll work on your heart - its only the size of a plum apparently. 5 hours you were gone, 5 long hours. We waited patiently, then we were told we could come and see you on PICU. When we went up your anesthetist was there keeping his eye on you, lovely man. It was a bit much for Daddy to see and he had to go and get a bit of fresh air. Me and Grandma stayed with you. Daddy soon came back I couldn't get over all the wires, I was reduced to stranger mum - like the first day we came on the ward. I couldn't bear it, but if they made you better I could just about stand it (didn't have much choice really did I?). Me and mum decided to go to the xmas carol service in the chapel at the hospital ... i remember the first song was something about baby jesus and just couldn't stop sobbing. I looked so silly, I left and came back to see Ethan.

TUESDAY, DECEMBER 25, 2007 03:20 PM, GMT Xmas day, Joshua came up to see you today. Santa left a BIG bag of pressies... you were asleep so we'd just have to wait. Still, we put your My First Xmas jumper over you and took your picture, its not like we can do it again!! We spent the morning with you and Joshua, then we went down onto the ward and had our xmas lunch in the play room sat on the tiny chairs and tables !! We looked so stupid! Joshua went to nana's house and we stayed with you until about 6 then we decided to go for a drink. To be honest, the nurses were so happy, but I couldn't celebrate I was annoyed that everyone was getting on with their lives when we were stuck in this nightmare. I just wanted to tell them to stop singing and laughing. But in the end I settled in a bit and relaxed... sitting next to you.

WEDNESDAY, DECEMBER 26, 2007 03:27 PM, GMT We came over from the flats, you'd had a good night and were doing well. A few arrhythmia's but nothing major so they restarted the amioderone. They talked about taking you off your ventilator later or tomorrow as you were doing some breaths yourself. There was a little girl in another bed a tiny baby who wasn't doing very well, her family were coming to say goodbye before they turned the life support off. They were everywhere (the family) sobbing, it wasn't nice she was obviously a very loved child. We felt awful, guilty as you were OK. We decided to leave the ward for a bit and give the family some more privacy.

NEW YEARS EVE 31ST DECEMBER 2007 We were discharged today, you had done very well post op and we were discharged again without an NG tube it was dark so must've been about teatime... we were really happy to be home but felt as if xmas had been pinched! So we arranged to do Xmas day on New Years with nana etc...

3RD JANUARY 2008 We took you back to the Freeman as you wouldn't feed, they put another ng tube in and discharged you. I had to pinch some large syringes as we had nothing at home. I didn't even know how to do ng feeds properly, I only knew if they went in ok - any problems and I was on the phone to a friend from the hospital who was used to ng feeding.

New to this!

2008-12-03T08:42:00.001-08:00

Hi All,
Firstly let me introduce us ! I am Sam, 28yr old mum to two yummy boys Josh (3 next Tuesday!) and Ethan (just turned one) and an equally yummy husband Dean.. we live in Durham UK.

I wanted to show how being a mum of an extra needs child can be challenging but rewarding at the same time !

So bear with me, and would love to hear your comments along the way!