Sorry We havent been around

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

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