feeding a wild deer.

seriously, i*ve just been accepted into the Amazon Associate program so if you want to buy anything in the future from Amazon try me first!

 ..I need some sunglasses to look at her when she gets mad!

Out in the garden at last..

Why do they always do that at the critical moment....

I was 3 recently and now i*m old enough to join the P.O.H. Club (pants-on-head)

I*ve got a thing for doughnuts and cheese and onion crips.

here*s what I eat most days:

Brekky

• 2 x bananas with syrup and sugar on top]
• 2 x weetabix with sugar on top
• 1/2 yoghurts
• 1 x Marmite on toast

Mid Morning snack

• doughnut
• packet of crisps
• 1 x Marmite on toast
• high calorie milkshake

Lunch

• tin of tuna and pasta or spagbol hoops or chicken curry
• a ham sandwich
• tin of banana delight or yoghurt

afternoon Snack

• crisps/ rice cake

Tea

• Pasta or spagbol or lasagna
• 1 x Marmite on toast
• tin of banana delight or yoghurt
• high calorie milkshake

sorry theres been no update for ages but i*m living life to the max at the moment!

and beat mummy and daddy up!

Hi all,

Very sorry about not updating my blog, but so much has been happening I just have not time!

Anyway.. I*ve been pretty well recently and got quite strong now - managing to keep myself out of hospital and trouble (well maybe not trouble)!

I can get everywhere now I can use my walker!

Still eating 4 tins a day..

got my super warm one-piece suit now - bring it on snow!!

These keep me toasty in the cold weather.

My heart rates been down to 50 a few times in the last few weeks when i*ve been i*ll!

big boy chair

i*m at nursery!

not me - honest!

We have entered the Great South Run in October  to raise money for PICU. If you were in any doubt of the importance of  Southampton PICU see below:

Please visit www.justgiving.com/Julia-May0 if you would like to donate

i*ve had a really good summer so far. i*m eating and growing lots more and I can nearly stand up on my own!

i*m coming into Southampton this month to see if my pressures can be brought down which would be really good.

Be seeing you!

Luke has taken being at home in his stride so far. The bigger concern is how family life will continue in the medium to long term.

Everyone is generally happy but also so very exhausted. After as year of living and travelling to Southampton, living in a hospital and eating the rancid cafe food (sorry Eaterie) it would have been nice to have had a bit of respite with 24hr care initially so we could have sorted ourselves out. At the moment we have 18hrs per day, 4hrs on Sat and no care on Sunday which may seem like a lot but when factor in a 3 week old baby in the remain remaing hours theres not much time to take a breather - of course this is *family* time. Of course i*ve realised we*re not doing enough after selling our cars, imminently selling the house, downgrading jobs, and one of us giving up work - and who needs a kitchen table to eat off anyway?

I love doing 10 hour night shifts after a day caring..

On Friday lunchtime Luke came home for the first time since being in hospital. He seemed to take it all in his stride and was very happy.

We took him back in the afternoon about 7pm and hope to bring him home again on Monday. Now we are just waiting for the special cot to arrive and the rest of his medical equipment and then I think we are good to go!

Luke also went to Uncle Dan and Auntie Izzy s wedding over the weekend. It was really nice to be there as a family and to catch up with friends and family. Luke also managed to match Uncle Dan s wedding attire, although he looked decidely more disheveled than the groom!!

On Wednesday I was discharged from Southhampton hospital and i*m now in Kingfisher ward at Dorchester hospital.

It was a really hectic few days for mummy and daddy having to get all my stuff and ready for the big move. Dr Connett gave me a broncoscopy on Tuesday to see how I was doing and he was pleased my airways generally looked better.

On Wednesday I left in the ambulance with mummy, Ruth and Angie about 11:30am. I was a bit sad saying bye to all the PICU nurses and consultants, and I think it prompted a really big fairwell vomit all over myself which Becky and Millie helped clean up!  I*ll try to make sure I come back and visit them again soon.

Arrived at Kingfisher Ward in Dorchester about 1:30pm. The nurses all seem really nice and Dr Wiley was there to say hello - he acted very quickly to help save my life when I first came into Dorchester A and E a year ago.

I*ve also been meeting the BUPA carers i*ll have looking after me at home who are also really nice. It*s a much more relaxed environment here for me and my family.

After all my kit was moved in and I was settled down for the night mummy and daddy left to go home about 7:30pm.

At about 10:30pm mummy started having some contractions and decided to come back to the hospital.

At 1:40am I had a little sister called Genevieve who weighed 7lb 13Oz  - a whole 5Oz more than me!

Next: i*m hoping to have some visits back home next week.

To be continued..

Brotherly Love!

30 mins old with daddy

I

f you ever wondered what Luke got did during the day this has been his routine (written by mummy).

07.00-09.00: Wake up, wash, trache tapes, neb: I normally wake up quite early, but if I wake up earlier than 7 then please encourage me to go back to sleep as I get quite grumpy if I get up too early! Once I*m awake I need a wash, my trache tapes changing and a neb to clear the gremlins off my chest. My bottom can get quite sore so sometimes I need special creams (depending what’s prescribed) in the morning, and hydrocortisone cream on my neck. My neck can get very sore if not changed twice daily and I need green ties if my neck looks red. Then I like to sit up in my bed so I can see what*s going on!

09.00: Breakfast (feed followed by bolus): Please sit me in my high chair with my bib on. I like organix banana brekkie and water (or some of my milk) from my beaker. Please encourage me to feed myself, I am quite good with my beaker and like to be involved in my feeding. The SALT lady said I should not be force fed so try to avoid putting the spoon in my mouth if I don*t open it. Recently I have only been taking a couple of spoonfuls before I turn my head away, but please persevere with me. You can give me biscuits etc. to play with too, but mostly I seem to know it’s food and avoid putting edible things in my mouth.

09.30-11.00: Play (dry circuit): After a good night*s sleep I should be invigorated so enjoy playing on my mat. I can nearly roll onto my front, but my arm gets stuck at the last bit. I am being encouraged to sit on a box/roll so I put weight on my feet and to lie over a roll with it supporting my chest so I can put weight through my arms. I also need to start to learn to re balance myself side to side and can do this if toys are placed just out of my reach when sitting. I like banging things together, but haven’t quite mastered clapping yet.

11.00-12.00: Rest: I do get quite tired and often have a little morning nap otherwise I get grumpy. Head rocking or flopping around is a good indication that I need a nap, preferably back in my bed/on my wet circuit.

12.00: Lunch: Same as breakfast with bolus after feed. I can try some savoury food, but I do have quite a sweet tooth so anything with banana/chocolate should be a good back up.
 I can try some of my finger foods as long as I am supervised, but please allow me to explore them myself.

12.30-14.00: Play: Hopefully I will have energy after my rest and can play again. If you have time, the SALT lady has given me some basic makaton signs to try and learn, particularly hello and goodbye. I am very sociable and love interacting with people. If there’s 2 people about I love to get out and about in my buggy too.

14.00-15.30: Rest: I get a bit tired mid afternoon and often have another rest.

15.30: ½ bolus feed: I have sometimes been a bit grizzly late afternoon, so the dietician suggested I have half my bolus feed (50ml?) a bit early to take the edge off my hunger. Other reasons for being upset include teething and a dirty nappy. I AM NORMALLY ONLY UNHAPPY FOR A REASON, so if I am upset for prolonged periods it might need further investigation.

15.30-17.00: Dry circuit (play or out and about), neb: Hopefully Mummy and/or Daddy might be here by now (sometimes earlier and Granny and Grandad often come at lunch) and we can go out and about,

17.00-18.30: Tea, bath, trache tapes, ready for bed: One of my family is normally on hand for the bedtime routine. It really needs to start at 5 so I don*t get too tired for my tapes. I really enjoy bathtime, splashing around with my favourite toys (the starfish is my favourite!)

18.30-19.00: Nebulizer/Storytime: A neb before bed and a story with all the animal noises! I like to have my muslin square to pull over my head (mind my expiratory valve!) and my bedtime lullabies if possible. Night, Night!

OVERNIGHT: I normally have nebs 4-6 hourly depending on my secretions. I am also on continuous feed from 7-7. I need my nappy changing a couple of times, especially as my stools are quite runny and if left in a dirty nappy my botty can get very sore!

The nurses keep styling my hair into funny styles because it is so long. Some of them think it*s lovely, some of them think Mummy should give it a trim. What do you think?! The online poll starts now....

 and hopefully we can get to dorchester to it*s not so far to travel!

hi all,

sorry i*ve not updated my blog since the new year but i*m so busy going out, rolling about, sitting and playing with my toys there*s no time.

The big news is I went outside for the first time in over six months last week and I really liked it.

I am beginning to enjoy some proper food from a spoon along with having lots of milk so i*m  growing so fast i*ll need a big boys bed soon!

I can turn the pages of my book, play the piano, lip read and sit all by myself unaided.

Luke playing Piano Concertos Nos. 1-4; Rhapsody on a Theme of Paganini

I also spending 10 hours a day on a portable ventilator which is good because I*ll need to be able to do that to come home and see NuNu.

The bad news is that I must stop flirting with all the nurses.

Some pix to follow I promise!

sorry i*ve not updated my blog for a while i*ve been mega busy smiling, playing and reaching out as I have lots of catching up to do!

My bowel operation went as well as it could have. I had to have half of it removed but the other half is good quality and should allow me to have a curry when i*m older, although my botty is very sore already because its not been used for so long.

I*m allowed to start trying fruit puree, but I can*t swallow very well so it might take time to actually eat anything properly, but its better than being on TPN and hopefully i*ll be able to try more exciting food soon.

More pix when I have time to upload them.

The next step is to get me off this ventilator and back on the portable NIPPY so I can go home again.

With Daddy Pre Op

Sitting (with Ange!)

Super Geek!

Camera Shy!

Jackanory (with Granny and Grandad!)

Thanks for everyone s lovely comments! I haven t had my jab yet so I ve still been feeling generally ok. Have been having my first proper baths in a while and the physios have been pleased with my sitting progress. Here are some highlights:

Showing off my new shoes

Resting Up!

Cuddles after bathtime

Enjoying my play gym

Bright Lights!

More Cuddles

Luke is still in PICU recovering from his mini op on Tuesday to clean up the infection around his sternum.

He is doing ok at the moment, back doing baby things again.

No news form GOS on a possible fix for the bronchus yet as his case has been referred to Denmark consultants for their opinion.

Since Friday Lukes infection markers went up slowly and on Sunday it was clear he has developed a really bad infection on his chest where he had his sternotomy. The infected area is rougly the size of a beer mat, is very swollen and covers most of his sternum.

Apparently this infection is actually in the bone and typically it is very rare for babies to get infections like this. He is currently being treated with hardcore antibiotics which we hope will clear it up over the next 48hrs. If the infection does not recede then they will propbably have to re-open his chest for a complete washout and remove any absessess/infected tissue.

Still no news from GOS.

On a positive note his bottom teeth came through..

Luke seems to be recovering well, but it is a worry that everytime he gets a virus or infection he will end up in intensive care. We are still waiting to hear from GOS.

At the moment Luke is doing lots of normal baby things - reaching out, teething and sleeping!

NooNoo the sheep & Beru do a sterling job of proping up the ventilator hose.

We are waiting for GOS to meet on thurs to discuss what*s best for Luke. We probably won*t know anything until next week. He may go up for an initial MOT type of thing and then come back.

There is some talk of a temporary stent or a serious operation.

At the moment Luke is slowly getting back to where he was before he was ill. We just hope this does not happen to him again before he can be fixed.

After another bronchoscopy is has become clear that Lukes left bronchus has now become severely narrowed. This means that his main problem is now not only one of getting oxygen in but getting carbon dioxide out.

It’s tricky because putting the ventilator pressures up to high to get oxygen into the lung, past the narrowing can cause the lung damage or even to burst.

Why this narrowing has suddenly happened nobody knows. But most likely has been happening very slowly since his right lung was removed and is perhaps the result of his physiology being changed.

GOS (Great Ormond Street) have been in informed and are meeting on Thursday to decide the best course of action as there is nothing left that can be done at Southampton.

One hopeful option is giving Luke a Bronchial Stent or using a technique called ballooning at GOS sometime next week.

Unfortunately for Luke he has to hang on till then remaining completely paralysed and sedated so not to put pressures on his system and has to until we know what’s next.

Unfortunately Luke has been working hard with his breathing during the night and dropped his heart rate very low for no obvious reason. They have decided to do a bronchoscopy later this morning to see if diagnose the cause.

I’ve wanted to say something about how wonderful the NHS is and what they have done for Luke but I always held back because I felt it might be tempting fate, not because of the quality of the NHS but because we’re not out of the woods with his recovery yet.

I hate being superstitious. I never was, but until things like this happen to you don’t want to take the slightest chance with anything. I wasn’t really religious before this but have found myself in the chapel plenty of times – that’s human nature I guess.

The bottom line is and to put it bluntly without the NHS we would be totally screwed with regards Luke’s life. I can tell you now - if the NHS ever finishes it will be it will be a sad day in British history. I don’t know how many of you reading this have ever had to go through anything like what’s happened to Luke (and I hope you never will) but I can assure you that if you ever did it would probably change your feelings for good on how valuable a commodity the NHS is.

Sure we’ve all been to the hospital before with a tooth that needs removing or to fix a broken finger perhaps – and probably had a grumble about waiting a while to get seen. This is such a small part of what really goes on behind the scenes – there is a much bigger picture at work. Luckily for most people this is their only experience of being in a hospital but it is just one of the many important cogs on the NHS wheel. The hospital itself just a veneer once you dig beneath the surface everyone from the cleaners to the brain surgeons plays an important role in making the NHS what it is.

The professionalism of the NHS nurses, doctors and surgeons is second to none. They sweat blood day in day out working 12.5+ hour shifts relentlessly. I’ve been there observing first hand for over four months, seeing them do it - never wavering, never faltering from their duty. This level of quality and professionalism is something we should want to keep and be proud that our nation provides. Sure it may need a few tweaks here and there but what doesn’t - show me a system thats perfect? As far as I’m concerned anyone who thinks we would be better off without it or wants it become privatized is deluded.

To be able to walk in off the street whether you be prince or pauper, 365 days a year and get treatment is a fantastic thing – long live the NHS!
 

Lukes had a reasonable period in HDU but on Monday this week he had the symptoms of an infection. On Tuesday morning we were called to say he was having a bit of a *wobble*. He was coughing up yellow mucus, irritable, was very hot and sweaty and had a higher heart rate. He got into such a state he de-satted to 60% had to be bagged and knocked out with chloral hydrate.

They took sputum swabs to send away for analysis and the results have shown no viral infection, so they are thinking its a bacterial infection which is differnet and possibly from his tracheostomy site which is dificult to keep clean.

As of yesterday evening his heart rate was still up high - 160 bpm for a sleeping baby, (and will be higher if he is fighting some bug), but has gradually come down. I will be going to see if it has improved shortly...

Luke had a visit from Sarah & Tracey today which really made his day!

+*now i*m awake alot more i*m wondering if i*ll have time to update my blog*+

Luke has been in HDU for nearly a week now and seems to be getting on ok.  His stoma bag is leaking often because he is moving about alot more as we are trying to get him doing *baby* things. This is making him a bit grumpy as it*s very excoriated - imagine a sore dry rash all over your stomach.

There is a plan to resect his bowel which will mean no more stomas within the next two weeks. The delay is so Luke can develop more as hes spent so much time sedated.

 grumpy boy!

Luke might be moving out of PICU into HDU (High Depependancy Unit) soon whilst he awaits his next operation. It is a step forward to go to HDU but Luke is a bit worried about leaving all the super professional nurses and doctors that he*s made friends with.

Daddy managed to get his first cuddle for a long while yesterday of which he hopes will be the first of many!

Luke seems to be doing better recently, coping more with being a baby but he is still very agitated from the Morphine and Clonodine withdrawal.

He still needs to have an operation to have his bowel resected sometime soon.

Enjoying a mid morning snooze in my chair after a good night.

Later on we had some smiles!

Today Luke had a relax in his chair, he likes the chair (even though he looks a bit grumpy here) because it means he can look around and keep an eye on whats going on...

Meanwhile life back home is a bit quiet and PlopZilla has resorted to eating pot-noodles and reading FHM!

Luke seems to be making progress at last. For the last few days he has been on a NIPPY which is a small portable ventilator which is a big step forward long term.

Luke had cuddles today, the first time for over a month for which most hes spent drugged out of his brains on morphine, completely asleep. For a tiny baby not to be able to near its mother for such a long time is truly sad - but today we had some smiles!

 (the NIPPY is the white box on shelf in background)

Luke has had quite a settled weekend all but for knocking the cannula out of his head causing a loss of blood so he had to be bandaged up like Rambo which I think he will proud of when hes older!

His pressures have been good over the last few days, down to 13 at some points and being under 20 most of the time.

We are hoping he will be ok for his Pexi op tomorrow morning.

Whilst going through the consent form and checklist for his op they realised Luke had a line infection so now looks like no op for today (friday) :( . Better to be safe than sorry and we understand the concerns of PICU - its just a bit gutting to have more set backs and more bad luck for Luke...

His op will now be on either monday but probably tues so hoping he will get through weekend ok.

Yesterday was an ok day, his peak pressures came down a bit to mid/late twenties. They shaved his head and put line in and I got told off from mum for letting them throw a bit of his hair away... :/

Fire alarm went of this morning about 11am... at one statge thought we had to evacuate the building but found out someones Whopper had been over done in Burger King on level below...

Luke had ok night having a mild Bradycardic episode at about 4:30am where his hear rate went down to about 80bpm. Was ok and recovered well.

Morphine & Chlonodine now at 1.4mls/0.6mls respectively.

Changed Stoma bag and nappy, and L is now having a doze..

L was weighed yesterday and came in at 8.1kg. A normal 4month old baby should be 7.1kg. This puts Luke in the 92 percentile, so I think we need some Slimfast TPN quick!

Generally L had an ok night, woke up a few times being grumpy. Had some piriton to stop scratching face which morphine induces.

Sill on 0.7mls of Clonidine & 1.5mls of Morphine

L had 4nurses singing to him earlier to get him to go to sleep whilst changing his arterial line!

Luke is having a new type of Trachy tube fitted. This one will hopefully be more flexible and provide better air flow to the Lung.