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