Luke's 1st day at school

Well today was a huuuuge day for us, Luke had his first session at school! It was just 1 and a half hours but he loved every minute and didn't want to leave. I, however, spent the whole time panicking and wondering what he was up to. The time went soooooooo slowly and I literally ran in to collect him haha.

He was very popular with the girls hehe, did some painting and loved the new class gerbils. He even joined in at snack time and drank half a glass of milk which is a massive deal for Luke. They also managed to get him to sit through ten whole minutes of assembly which amazes me no end as he will not sit still bless him.

He was absolutely shattered by the end and fell asleep as soon as we got into the car but then went hyper as soon as we returned home hmmmm overtired me thinks. So he will go again next friday arghhhh he is growing up so fast.

Mucky Puppy

Arghhhhhhhhhh was the sound from my house this morning. Daddy had let Luke loose with some felt tips and the orange one had managed to colour in Luke's hand and then his hand had managed to stamp lovely handprints all over his bedroom wall!!! Obviously both parties pleaded their innocence even if one was completely orange from head to toe haha.

All we got were new shoes!

Yesterday we went shopping and Luke had ideas of spending lots of money on Peppa Pig, thing is he already has EVERYTHING Peppa. Whilst out I decided we would get his feet measured as they haven't grown in ages and new shoes would be nice. They were exactly the same size but once in Luke decided that, just like in the Peppa episode 'New red shoes', he was getting some - yes you have guessed it - new red shoes!

I asked the sales Lady to get out any summer shoes she had in red as it would be nice to have some nice sandals for sunny days in the garden and if the boy wants red well give him red. Fashion conscious at 3 is, however, somewhat scary. Luckily they had the perfect pair of red summer sandals complete with snazzy flashing lights so a sale was done.

Once home Luke, with the Peppa episode clearly still in mind, decided he needed his new red shoes on to go to bed! That Peppa pig has an awful lot to answer for!

Still No Answers

So we had our appointment today where we had hoped we may get a diagnosis for Luke's ongoing Gut problems. Well we didn't. They have had several discussions with other consultants but they are all clueless, whatever it is is unusual and very annoying. The upshot is we just carry on as we are and the team will do everything they can to help us manage the symptoms as best as possible and will continue to research what it could be.

They have also said that we must watch him like a hawk and take him to hospital as soon as he looks off colour as he is so prone to getting septacaemia but fingers crossed he will stay well for a very long time. The good news is that he continues to grow and put on weight so the TPN is doing its job well.

How the TPN Works

People often ask me what is TPN and how is it given to Luke so I thought I would try and explain a little. TPN stands for Total Parental Nutrition and is basically a bag full of all the essential nutrients and vitamins needed to live. It also contains something called Lipids which are the fats and calories we need to survive and gain weight. It is given Intravenously and it is possible to live on TPN alone for a very long peroid of time but it is not without its complications and strains on life.

The first picture shows the site where Luke's Broviac line is inserted which is in a main artery very close to his heart. This is why it is serious when the line becomes infected as the infection gets into the blood stream very, very fast and is pumped all around the body. It is also important that the line is kept safe so that it is not pulled out.

Luke spends 15 hours each night hooked up to his TPN and I have had to have Intravenous training in order to be able to administer it to him as it has to be put on and taken off in a sterile field to limit infection risk. Once it is up it is placed into a machine as in the second picture. This ensures that the correct dose is administered each hour and also has safety features on it as no air must get into the veins. Again, I have had to have training for this. Noone knows how long Luke will need his TPN for but hopefully this helps you to understand what it is.

Sunshine

Yesterday the sun was shining and so we spent the whole day in the garden having fun with Luke's friends from next door. They didn't stop and it was lovely to see Luke being a real boy digging for worms, playing with ants and snails and getting very, very mucky.

We ended the day with a BBQ when Daddy got in from work which Luke found quite fascinating. He didn't eat much but he found sitting on a picnic blanket messing with the food great fun and then he played some more. I intended on leting him have a little bit of a later night as with the TPN our routine is always so strict but he couldn't stay awake and asked to go to bed at the usual time anyway bless him.

He was absolutely whacked out from all the fun but he went to bed glowing and with a huge smile on his face which made my day. He slept in til 10am this morning too which was an added bonus but unfortunately it rained all day and he was so upset not to be able to play out again. Typically the sun is now out but he is fast asleep, lets hope it lasts for tomorrow.

More Time in Hospital

I haven't been able to blog for a couple of weeks as Luke has been in hospital again. He woke up on the wednesday morning before Easter with a very high temperature and was very lethargic. By the time we got to the children's ward his temp was 40.2 and he was really drained so they did all the usual bloods and started IV antibiotics. He was up all night vomiting and his temp just wouldn't come down and so I spent the night in conditions worse than the antartic!

Come Thursday there was no improvement and so Luke was blue lighted to Alder Hey, his second home. In a nutshell he had an infection in his central line but as he has only just got over Endocarditis they were worried it could flare up again which would be very bad news. He had 2 weeks of IV antib's and then they felt it was all gone. They really wanted to get rid of his line but as his veins have been used over and over for bypass, and will again in the future, his veins are too precious so they have left it in and hopefully it will not send him septic again.

Whilst we were in they also did his colonoscopy as his condition is getting worse and they were quite shocked when they saw it for themselves. They took some biopsies and at first believed it may be Crohns disease but now believe it is something more complex and so have taken the biopsies for further investigation. We will go back Wednesday and hopefully will get a little further into whats going on. For now we will stick to the TPN. At least we are home and Luke is extremely happy to be back out in the sun with his mates.