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!

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

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

..Or a Life model?

and beat mummy and daddy up!

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*m eating loads!

My son Luke was in Southampton PICU for a year and received open heart surgery amongst his many operations. I know how good this place is from first hand experience and I urge any parent to make the effort to support the unit.

If Southampton is closed, all children from across the south coast, Isle of Wight and the Channel Islands will be sent either to London or Bristol. Southampton is a successful centre and is rated the 2nd best performing unit in the country. Not only are the surgical team outstanding, but there is also parent accommodation available, on site at the hospital and in houses close by to the hospital.

You may be thinking - my child doesn*t have a heart problem, why should I worry?
Heart problems may be detected at birth or may lie undetected for several years. Occasionally a virus may lead to a heart condition. In many cases, time is critical. The longer the wait for treatment, the worse the outcome may be.
In addition, if a child is taken critically ill, they may need specialised treatment in PICU.
For example, contracting meningitis or a road traffic accident.

If the cardiac unit is closed, beds in PICU will in turn be closed. Therefore, other (non-cardiac) children will also face being treated in other hospitals.

By signing this petition you are asking that the countries second best children*s heart surgery unit is not closed in favour of lower performing units.

Here are a number of very quick ways you can help before the deadline of the 1 July 2011

TEXT:

Participate in a free textathon by texting HEART to 85001. You will get an instant reply, and then you reply: OPTION B and that’s it - its all free.

INTERNET:

You can fill out the e-petition online: www.LukesLife.co.uk/heart

If you have more time to spare then there is a more comprehensive petition here:

www.LukesLife.co.uk/bigheart (support Option B. Remember, Option B is the only option to keep a childrens heart unit on the South Coast.  The questionnaire is quite detailed so if you require any assistance, please call the hotline 023 8079 8773)

PHONE:
There is also a campaign hotline on: 023 8079 8773

More information can be found at: www.friendsofpicu.org.uk

I*ve been trying to tell Genevieve before her birthday that when she*s one life will be different also.. 

She just won*t listen..

Next time:

Luke stars in: Mixie the Movie

I can get everywhere now I can use my walker!

Still eating 4 tins a day..

I*m back! Sorrry i*ve not had time update my blog - I had a nasty tummy bug for a few weeks.

Things are going well. I am now making lots of noise since my trachy downsize to a 4.5mm which is great! 

I must have everything you have..

Happy again now!

Me with Father Christmas!!

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

Where*s GU?

(daddy got very upset when I beat him in the butterfly)

Exploring at Naomi House

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!

I knew Co-Op were *good with food* but didn*t know they were good with buggies too..

Luke*s been in and out of hospital the last month with some some nasty, chesty coughs but seems to getting through it now and is getting back to his old self!

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!

Mum, Genevieve and carer

@ West Bay with Mumy and carer

Having my piano lesson.

Lukey in Kingfisher Ward in Dorchester with Grandad Broom

Genevieve say hello to horsey..

Who needs a kitchen table..

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?

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!!

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

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!

In PICU mostly lots of good things happen, but also occasionally some unfortunate things. Being exposed to children and babies being very ill and sometimes dying near you is not pleasant but this is the reality of being in an intensive care unit. We as a family have now become almost immune to anything – the fact is when you are in such an environment for so long (especially early on) you are so mentally fragile that you just don*t have the capacity to worry about anything else, or engage a parent you see in the unit about their situation, your sole focus and priority becomes your child - its a brutal reality brought about by circumstance.

Going to LTV on Tuesday was like leaving a family behind because when you are in PICU week in week out caring for your child you get to know all the doctors, nurses, surgeons, cleaners, the dietician, the physiotherapist - you absorb the vibe, you almost feel like you are part of *the team* and for myself, who works from home, on my own 99% of the time, it was like being in a *proper* work environment where there was banter and I learnt new things.

Now that Luke has been stable for a while I really feel it*s great he*s ready to go upstairs as it*s truly a giant step forward to finally getting him home, but we will never forget what the people of PICU have done for Luke and his family.

I celebrated my first birthday yesterday. I had an amazing day, being the centre of attention with all my lovely nurses in PICU. They got me a lovely cake, nurse Millie made me an amazing card and we had a brilliant party. It was definately my best day so far! Today I move up to the Long Term Ventilation Unit which is the first step to getting home. It is quite exciting, but I will be very sad to say goodbye to all the nurses and doctors in PICU which has been my home for much of the past year. I will definately keep popping in to see them though because they have been so brilliant to me and my family.

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

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!

 I have been trialling a posh new portable ventilator and so far it has suited me well which is good news in the long run. The next step is to get used to a dry circuit which will actually allow me to move more easily around my bed space and hopefully eventually give me the chance to leave the ward and go on little trips outside (although it was snowing today so I don*t fancy that too much at the moment!!). ?!!

 Last week I met Southampton FC, but silly Mummy didn*t really know who any of the players were so I couldn*t ask for their autographs. I was also asked to pose for the new PICU brochure, and as posing is one of my favourite hobbies, I think I did rather a good job. My bed is looking very festive and Mummy keeps making me wear silly Christmas costumes, as if I didn*t have enough problems already! Apparently Father Christmas comes to visit the hospital so I must write my list and remember to put my stocking up.

Hope I*ve beeen a good boy (Mummy and Daddy think I have!)................................................................, wonder how he gets in without a chimney?!!

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

Sorry it*s been so long since my last update, I have been feeling a bit better this week so have been enjoying catching up on a few baby things. I have been smiling, sitting, having cuddles and growing my toothy pegs. It has been so exciting sitting up and getting a better view that the nurses have accused me of being nosey. How rude! Unfortunately I have to have my swine flu jab next week which will probably make me feel pretty sick for a couple of days so I*m just enjoying myself whilst I can!

 Cheeky!

Bumbo

Cuddles with Mummy

Sitting Up Practice

Trying out my Uggs all the way from McFi in Oz

Racing car stylie, just like Daddy!

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.

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..

He has raised over two thousand pounds for PICU and we are very proud of him!

Good Luck Dan - see you at the end.

You can sponsor Dan here: http://www.justgiving.com/Daniel-Broom/

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.

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.

Luke is in a better state than he was earlier in the week the PICU staff have done a great job stablising him again.

On a positive note Daniel Broom (Julia*s Brother) has rasied nearly two thousand pounds in sposorship for doing the Great South Run in two weeks time.

All donations go to supporting PICU in Southampton, if you would like to donate please click below:

http://www.justgiving.com/Daniel-Broom/

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.

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!
 

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...

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

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 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.

Later on we had some smiles!

• aorta pexi - involves cracking open stenum for some general rumaging about with heart and airways
• laparotomy - involves an incision through the abdominal wall to gain access into the abdominal cavity
• CT Scan - a special kind of X-ray machine. Instead of sending out a single X-ray through the body
• bronchoscopy - a procedure which can help to diagnose some conditions of the airways (bronchi)
• thoracostomy -  involves making an incision between the ribs (under the armpit)
• pneumonectomy - the surgical removal of a lung
• tracheostomy - a surgical procedures on the neck to open a direct airway via an incision in the trachea

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

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)

PICU is the regional centre for the South of England, and one of only 9 tertiary care centres in the UK. This means that any child needing intensive care in the South of England would be likely to receive treatment there. As there are only 11 purpose built bed spaces, the unit can become full quite quickly. More than 700 children are admitted each year, many from A and E departments across the region or following major surgery. Children from newborn to 17 years are cared for in the specialist unit. This may be due to massive trauma following a road traffic accident, or other serious illnesses, or as a result of serious heart disease in tiny babies. The unit encourages family centred care by incorporating the family in the care of their child, and providing family accommodation to help the families cope with the trauma of their child being admitted to the unit.

Running such a service requires high standards of care, and this requires frequent investment. The charity, Friends of PICU, aims to support this work by helping to purchase new life saving equipment, as well as toys, baby equipment and in the near future a new ambulance. The average cost of a night on the ward before any medical intervention is £1500, whilst the incubator that Luke first stayed in cost £75 000 so costs are very high! If you would like to support this Charity then please log onto Daniel’s web page: http://www.justgiving.com/Daniel-Broom/

The op seemed to go well, the general feeling was that it needed to be done and should achieve some greater good both long and short term.

Unfortunately in the operation Luke dumped out quite alot of blood and fluids so when he arrived back in PICU he had to be given a top up of blood and Gello (plasma type of thing) Later on that evening he continued to look very pale, his lips losing all redness and his blood pressure seemed to be dropping quite rapidly even though they were keeping him topped up with fluids. After an X-ray one of the consultants noticed some fluid build up around his lung and decided to put another chest drain in to remove it. This did not seem to work as the blood had coagulated and would not drain out, so this moring he went in for a mini op to remove and this seems to have gone ok and Luke is now back on PICU after operation number 9!

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.

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... :/

The new plan is for a mediastino pexi on Friday. This operation basically involves moving and stiching the heart ot the inside of the chest cavity and some general rummaging around to see if they can make his airways less distorted.

During yesterday he was vomiting and did not seem himself in the afternoon.

In the night he had to be bagged (mainly thought due to a secretion plug in airway) and his pressures are back up around 30 when we would like them to be low twenties.

At the moment hes on Midazolam rather than being veced out and about to have some physio on his chest.

Nanny & Nanny NuNu both came to visit in afternoon.

During the last few days Lukes blood hemoglobin content has become a bit low due to all the samples taken for test to make sure everythings ok. This means the blood is not carrying oxygen as effeciently as one would like. It sould be at 11 and never really go below 7.2 his has been at 7.2/7.3 for the last few days as his body can not regenerate it quck enough as hes so small - thus a blood transfusion was given today at about 6pm and it seems to have gon ok with no reactions etc. 

PEEK

Peek is the amount of air pressure being put in by the ventilator and it ideally needs to stay below 35 ideally around 23/25 - best would be low teens. When Luke wakes up it can become 35/36 which is worry as the extra pressure can damage his lung.

CLONIDINE - Helps with the withdrawal of long term Morphine use and high blood pressure.

VECURONIUM - A muscle relaxant in the category of non-depolarizing blocking agents.

MIDAZOLAM - fast acting short term pain killer

CHLORAL HYDRATE - A sedative and hypnotic drug as well as a chemical reagent and precursor.

SUXAMETHONIUM - A medication used to induce muscle relaxation

PIRITON - stops itching caused by morphine

PARACETAMOL - General pain killer

PETHADINE -

SODIUM HYDRATE -

VAMIN -

LIPID -

We already know he has bronchial malacia in both the upper bronchus and a further narrowing far down in the lower lobe. One problem this causes is him being able to get enough oxygen to this lower lobe to help prevent infections.

The CT Scan results did not really reveal anything exciting. One hypothesis for his death episodes is that the left lower lobe of his lung is aggravating one his major arteries. Another thought is that these same arteries become enlarged because of the amount blood going through them due to the extra work he has to do only having one lung.

The doctors and consultants will meet on Monday to see if there is a way forward.

He is due to have a CT Scan tomorrow which we hope will show the state.

his morphne is still 1.4 - cholonodice 0.6

Mucus is a sticky fluid which is found on the surfaces of the normal airway. Its main function is to trap dust particles in the air, before they travel deep into the lungs. The specialised lining cells of the airway have mechanisms both to produce this mucus, and then to transport it - together with the trapped dust particles - up the airway to the throat, where it is either coughed out or swallowed.

The mechanism is normally so efficient that most people hardly notice that they have mucus to clear and just automatically clear their throat from time to time.

Severe tracheomalacia

In extreme cases, the infant may experience acute life-threatening episodes often called ‘near death episodes,’ when the baby seems to be choking and unable to breathe. The trachea actually collapses, so that no air can pass through it.

Because these extreme situations are so rare, many doctors have never witnessed one of these episodes; the child is in any case often perfectly well by the time they get to hospital or are seen by a doctor.

The story of a baby going blue with hard crying may suggest ‘breath holding attacks’ - which are relatively common. However, these tend to occur in older toddlers who are either angry or very upset, and happen at the end of a big breath in or out. The ‘near death episodes’ usually happen in the midst of a normal crying spell, and happen near the start of either breathing in or out (depending on where the tracheomalacia is). Observers who can describe these kinds of detail about episodes can help greatly in making a correct diagnosis.

The attacks can be very distressing. Nonetheless, when the child passes out, their relaxed state helps to open up the airway, bringing recovery; gently pulling the tongue forward may help as a first aid measure. If the baby is unconscious and not breathing, blowing gently into the airway by mouth to nose-and-mouth respiration is the correct course of action.

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..

Lukes had about 10+ of these so far, it is a very distressing thing to see as a parent.

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!

To run such a service and maintain high standards of care, which is paramount in the care of seriously ill Children, requires frequent up dating.

Therefore we are looking for help to maintain and purchase new life saving equipment .
 
Registered Charity No.1116880

Donate Online

STOMA BAG - Works in a similar way to a small hoover bag in that the bags hole goes over where the gut sticks out to catch the contents processed by the bowel thus bypassing the rectum.

TPN - Total Prenatal Nutrition, a form of feed substitute given intravenously that provides all a baby needs to live and grow

SATURATION

DESATTURATION (destting)

HEART RATE

BLOOD PRESSURE

ESG

VENTILATOR - A machine that can puts air into the lungs to aid breathing

OSCILLATOR -