Appointments

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

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

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!

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!

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!

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

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

We are home!!

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?

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!

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

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 :(

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 :)

Sender: 07867788909   Your message:   +07867788909 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   Sending a reply: You can reply by email to this mobile number within the next 7 days. < only include attachments in jpeg or wav format. < The total message size should not exceed 300kb. < You can only reply once, and it must be within 7 days of receiving this message.

Has a very tired boy today

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!

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

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

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!

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

Seems more settled today don't you think!

Ethan's new sats !

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

Ethan day one post op.

Ethan just after surgery. Rastelli operation

Its Done!

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

(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

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!!

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

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

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..

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

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

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

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

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