Monday, 30 March 2009

A Clear Out


Well today the weather was pretty grim and so I decided to tackle Lukes wardrobes. Since he started the TPN he has had a real growth spurt. He has gone from being in clothes for a 12-18mths to 3-4 on top and 2-3 on the bottom!!!!!!!!!!!!! This is a huge achievement as Luke has always struggled with weight gain and growth.

I pulled everything out of his wardrobe and ended up with 3 piles. One pile being too small (lots not even worn grrrr), one pile way to big and a very measly third pile that actually fits. Once I had done this I then had a panic as the actually fits pile didn't equate to much, especially in the pyjama department so we hit the shops yay.

Well I say yay but it was actually a very big yuck as all the shops have now got their summer bedwear in stock. So not good for keeping a child with a heart condition warm at night. Absolutely everything had short sleeves and legs so we came back empty handed. Surely most other kids in the country would prefer to be in long cosy pj's still, I mean it's hardly tropical weather is it! Please give me a shout if you come across a sensible retailer.

We then did a bit of painting and made a kaleidascope which was fun if not a bit messy. I think that my creative genes are definately in Luke as he just loves drawing and making things. I am of course very pleased as I love any excuse to be arty.

On a more serious note we got the date for Luke's colonoscopy, 29th April. We are awaiting confirmation that this is definate as it depends on all departments being available (cardiac, ENT and dental) Gastro are free so thats the main thing lol! They have suggested that the examination may still not provide a diagnosis and in the event of this he is to exchange his enteral feed from Pepti junior to stinky Monogen yuckyyyyyyyyyyy so not looking forward to making that up! Fingers crossed they will find the cause and thats its something that can be sorted.

Sunday, 29 March 2009

A day with friends

Well today has been a lovely sunny day and despite losing the hour and making me tired and confused its been a great day.

Its amazing how just one hour can set your whole day back. Luke's TPN had to come off at 10 rather than 9am so he had had the full dose and so then I had a frantic rush on to catch up with all his meds so I wasn't behind the rest of the day. Come midday I had managed to get my head around things and could get on with our trip out.

We went, much to Luke's excitement, to visit some dear friends we made whilst in hospital. They have 4 children and so Luke was in his element. He laughed and played and laughed some more. Infact he didn't stop from the moment we arrived to the moment we left and he enjoyed every minute of it. It is lovely when children can play so nicely together and don't squabble. He enjoyed himself so much that he was asleep before we had even driven out of their road and slept the whole journey home. This I was rather pleased about as all the way there he had copied the sat nav word for word which was really quite annoying as you can probably imagine.

Anyway, he is now back up in bed and hooked up to his IV's which he is not at all impressed about. I do feel kind of mean as in his head it is only 5pm but i have to get 15 hours in so its just hard luck bless him. I am sure he will soon be off to sleep dreaming of his little friends and the mischief they have caused.

We have a rather special week ahead of us in that we have NO appointments at the hospital this week!! We do, however, still have the nurses round on thursday for his dressing change but other than that we can enjoy yay Luke will be pleased.

Saturday, 28 March 2009

A new place for my thoughts

Hello, I am Kelly and I am the proud mummy of Luke.

Luke is now 3 years old and boy what a mad 3 years it has been. I could never have imagined nor prepared myself for the joy, pleasure, sadness, heartbreak and many more mixed emotions I have experienced since Luke was born.

Born with a complex congenital heart disease, Luke has had to endure lots and lots of hospital stays. He has had 3 major open heart surgeries, the first one at just 2 weeks of age and countless other procedures. He is treated at Alder Hey Childrens Hospital and I will be eternally grateful to them for saving my son's life and for keeping him a healthy and happy child.

He had his most recent heart surgery, the Rastelli procedure, in September 2008 which resulted in complication after complication. He contracted mediastinitis, osteomylitis and endocarditis meaning lots of surgery, antibiotics and a mammoth hospital stay. During all of this something happened to his gut and he now has a complex, yet so far undiagnosed , gut problem. For this he takes a daily cocktail of drugs and is fed intravenously with Total Parental Nutrition.

I have tried writing blogs before and I forget about them after a week or so but this time I am going to endeavour to keep it going. Every day people ask me about Luke's life but its impossible to tell anyone just what it is like, it really is something difficult for anyone to grasp. So maybe by reading this blog people may get a better idea of our life and the utter braveness and strength of my son.