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.

Thursday, 29 April 2010

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

Saturday, 24 April 2010

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

Thursday, 22 April 2010

Raising awareness of chd

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

Sunday, 18 April 2010

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.

Thursday, 15 April 2010

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.

Monday, 12 April 2010

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 :)

Sunday, 11 April 2010

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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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Saturday, 10 April 2010

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

Friday, 9 April 2010

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

Thursday, 8 April 2010

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

Wednesday, 7 April 2010

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

Tuesday, 6 April 2010

Seems more settled today don't you think!

Saturday, 3 April 2010

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!!

Thank you for your prayers we need them !!