Yippee Josh was discharged on Friday the 11th feb, they decided we could do whatever the hospital was doing at Home. He has had good and bad days but is improving daily. He has developed a nasty cough!

He has had his INR done twice since coming home, one Venus and the other a normal Coag check, bless him he hasn't been bothered about either of them. His INR has been pretty stable and I so hope it continues to, we will then be able to home test.

We have been so lucky with his Coagucheck machine, we have a fabulous friend (Lewis) whom dis the Portsmouth half marathon and raised lots of cash, so a massive thank you to him and to all who sponsored him. Our lady of the angels school(Joshua's infant school) had a wear red day to help raise money and wow £697 was raised, so massive thank you to Kelly Wroe and Helen Freeguard for the support you have given to us and the hard work you have put into the fundraiser event. There are Some truly lovely people about and we have been so blessed with the amount of support(Gemma and Ade, Vicky and lew, Rob and Julie, all my special heart mummies Ali, Lindsey, Kay, Kymm,Steph and Ann-Marie and so many more)a massive thank you from the bottom of our hearts for just being there.

Hopefully we will be back in our own home soon, will
Put some more pictures on then.

We are back in Bch on the 3rd march for our post op appointment so will keep
You updated on that.
Josh hasn't slept very well since being at home, so bed time for me.

Good night and god bless.

- Sent from iPhone.

Location:Discharged on Friday 11th

It's been an eventful day today, on the dr's round they told us that one of the blood tests they did yesterday have come back high( it was one for infection!) hopefully it will be due to the drains being in such a Long time. They decided to take out His last drain today. It took 2 lots of midazolam to work, this time he didn't sleep just talked alot and giggled, to see the drain taken out this time was just as awful or even more so this time. He kept asking me to make them stop hurting him! It broke my heart. Thankfully he can't remember anything.
He was much brighter this evening( still very high on midazolam!!) it's funny to see a 5 year old act as if they've had a good beer session!!! His appetite has picked up today as well.
Hopefully his bowels will start having a good clear out and he can start putting loads of weight back on, he was weighed again today and he has lost 2kilo's, he looks very frail and its hard to see him Like it.
This is the first picture without drains with his big sister sat on the floor playing.


- Sent from iPhone.

Syringe painting with mummy.xx


- Sent from iPhone.

Mummy making Josh laugh.


- Sent from iPhone.

Well what a few days it's been.
Josh still has all three drains in, the left and middle could come out but his INR has been to high so fingers crossed for tomorrow!
Dr Dhillon has been through all his previous echo's and the right ventricle has always had this problem but was not apparent until now.
They are concerned but want to concentrate on getting him better at the moment.
His appetite has been really bad, vomiting alot and now has diarrhoea (poor little man is going through it!)
They have got the dietician involved as he has lost a lot if weight so he's now on special drinks full of calories!!
He had a fun time yesterday with the play specialist( and mummy and daddy!!)we did syringe painting! It was great fun and to see him smile was fab.
The plan of action next week will be catheter sometime next week and hopefully sort out any warfarin issues.
On Tuesday he had teachers from
School come and visit him. It really cheered him up and he was very happy with the lovely card all his friends made him and the wonderful gifts that they sent. Thank you to all the children in reception, Joshua misses you all (especially Alfie!)thank you to all the staff at our ladys and also at St Josephs the support you have given us has been fantastic and we really appreciate in all you have done.
The support we have received from some people has been amazing and we can't thank you enough. Lewis and Vicky thank you for raising the money for his INR machine we can't thank you enough. It will make our lives so much easier. Any money raised after the cost of the machine will be going to Birmingham Children's heart appeal as this is so close to out heart, if it wasn't for the expert care Josh has received he would not be with us now, we owe everything to the whole cardiac team(especially the surgeons!).
Will update again Monday when we will have more of an idea what's going on.

- Sent from iPhone.