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.

Road Trip

Well yesterday we headed off on a road trip to Leeds for a wander around the city and a spot of lunch. Luke enjoyed the drive through the countryside even though he slept for most of it lol. We had a nice walk around all the nice quirky shops and bought some yummy chocolates and then headed up to the Corn Exchange.

The last time we were in Leeds the Corn Exchange was lots of little shops but now it has been turned into food heaven and I loved it! Luke thought he was in a castle so he was in his element and I thoroughly enjoyed taking in the aromas at the Fromagerie and the Bakery.

In the middle is a restaurant owned by Anthony Flinn and the food really was deeeeeelicious and I can't wait to go back. Both Anthony and Anthony Senior were there and they were both very friendly and really loved Luke and took him off to the chocolate shop. Not that Luke ate any of the stuff but he did enjoy mauling it and it was a very nice touch to be so welcoming of toddlers. Luke of course thrived off the attention byt was on his best behaviour with the promise of some Peppa pig goodies after lunch haha

Tired Little Boy

Well after a couple of fun filled days today I had a very tired little boy on my hands. He started the day eager to get outside into the sunshine but he was a little cranky and tired so we settled on the lawn and painted some plant pots which we are going to pot flowers in and give to Grandma hehe lucky her hey. He got bored after a while and I think this wasn't helped by the extremely cute Thomas tabard that he was in disagreement to lol.

Luke spent the rest of the afternoon really dozy and although he wouldn't actually sleep he just lazed around listening to annoying Balamory tunes and watching Peppa Pig. He had a small burst of energy to eat an ice cream which I would have very much appreciated him sitting down to eat rather than wandering around aimlessly leaving a drippy trail behind him grrr.

Just before bedtime we decided to make some little chocolate cupcakes which Luke enjoyed, especially licking the spoon which shocked me a little as with his usual refusal to eat anything that was the 2nd thing to pass his lips in the day. However, once the cakes were in the oven he quickly lost interest and decided it was bedtime.

Luke was playing in his room whilst I got his bath together and I could hear he was up to something as he was chattering away to himself. I went in to see and was absolutely stunned to see that Luke had set up his TPN trolley with a sterile field, gloves, some wipes, an apron and some sodium chloride!! He then proudly declared "your trolley is ready mummy". Well i was gobsmacked. Obviously nothing he had accessed could hurt him in anyway but I just could not believe that a 3 year old could know so much. Do not understand the intelligence of a toddler!

Muddy Puddles

Well today we were disappointed to wake up to rain. Luke, who decided it was actually snowing, still couldn't wait to get outside into the garden. Once the rain stopped the sun tried to break through so I wrapped him up and out he went. He managed to make a bee line straight for the biggest muddiest puddle and stayed there stomping and splashing for the entire morning. He was drenched bless him but he had such fun.

I decided to drag him in when he started crawling through it and got him changed and we went for a little walk with some friends. As soon as we got back onto our turf he was straight back in the puddle which by now was more like gloopy mud. He continued to mess about and get filthy but as he was getting a little blue i called time and we went for a nice warm bath and into his pjs. He was absolutely shattered but has proved that all the money spent on expensive garden toys is wasted as all he needs is a muddy patch of water.

A Lovely Day

Well after the stresses of yesterday I am pleased to report that we have had an absolutely wonderful day today! The sun was shining and Luke was smiling what more could I want for. We spent the whole day outside just messing in the garden, riding Lukes tractor, playing in his playhouse, in the sand and watering all the flowers. It was so relaxing and lots of fun which we needed. Luke absolutely adores the outside and he is never happier than when he can just explore and roam free in the garden. He also has some little friends that live next door and it was so sweet when he decided to knock on their door and aske if they could come out to play awww. My little boy is growing up sooooo fast.

What a Day!!!

Well yesterday we had a rather eventful day to say the least and I wouldn't have been surprised if I had woken up grey lol.

The day started with the community nurses coming round to take Luke's monthly bloods and to do a dressing change. He was fine about them accessing his line for the blood but when it came to doing the dressing he went bananas as usual. He gets absolutely terrified everytime and puts up such a fight bless him. It is highly distressing for everyone involved but sadly it just has to be done. Anyway when they removed the old dressing the site was oozing and very sore so it was decided it would be rechecked at Alder Hey in the afternoon as we were headed there anyway. Poor Luke thought he was done with dressings for another week bless his heart.

We got to AH and Luke kicked off BIG time, he just hates the place. The problem is that he never gets long enough away from the place to get over the last visit and he tends to meltdown the minute we enter the building. It was such a warm day and sweat was literally dripping off the pair of us as he fought to break out and I fought to get him in the place :( He needed weighing but wouldn't co operate so the dietician and I just discussed where we could go next with Luke and his problems. We are going to hold out until after the colonoscopy before we make any real changes so that we can see if we get a diagnosis from that first. The general consensus, however, is that after the scope he will go onto a fat free diet alongside his TPN to see if it improves his symptoms - think i could do with that diet!

He then had to have his site looked at once more and it would seem it has overgranulated - his body is trying to heal and push out the line. So they have decided to use a different dressing yet again and see if things improve.

We both left really exhausted and Luke somewhat traumatised bless him, he slept well poor thing.

Snoring

Guess whether this is my dear hubby, my adorable son or both??

Yes both! Last night was like sleeping at the foot of an erupting volcano, in the midst of an earthquake whilst ten elephants did the river dance on my head.

Luke is actually the worst believe it or not. Since his last operation his snoring has been terrible and it has now been suggested that maybe he has large tonsils. They are going to have a look at them whilst he is under the GA for his colonoscopy so fingers crossed they dont find anything wrong. Although it would reduce the nightly din by 50% he really doesn't need to be going through anymore procedures.

So that means that I will happily put up with Luke's snoring BUT dear hubby you better beware!!!!