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.

A MAN determined to show his gratitude for the skill and care given to his nephew who is currently in Southampton General Hospital has raised £3000 for the Paediatric Intensive Care Unit (PICU) after completing The Great South Run on Sunday.
Daniel Broom from Bridport was so impressed by the skill and care given to his nephew Luke May that he was only too happy to volunteer for the 10 mile race around Portsmouth when they asked for volunteers.
Luke was only six weeks old when he was diagnosed with a diaphragmatic hernia and rushed to Southampton in a critically ill condition in June where he received a life saving operation. He is still in hospital some 20 weeks later having had ten major operations including the removal of his right lung, and is set to be there for a few months more.
Despite some knee problems that restricted his training to ensure he could run on the day, Dan completed the course in 1:28:38, inside the target time he had set himself of 1 ½ hours.
The course took over 21,000 runners around the naval base and finished with a two mile run into a very strong wind along Southsea seafront.
Dan who was in the first 4000 to finish the race, which included top international athletes, was more than pleased with his run, but more so with the money he had raised for the charity.
“I had set myself a target of 1 ½ hours for the run and was very pleased to have completed the course inside the time particularly as we had to run into the westerly gale force winds for the first two miles, which wasn’t so bad when you are fresh, but then also the final two miles along Southsea seafront.
“However I am particularly delighted to have managed to raise so much money for The Friends of PICU to show our families gratitude for the wonderful care that has been shown to Luke. He has had so much to endure, but is a real fighter, and I am so proud of him.
“I would like to thank everybody that has donated to the cause. I am amazed by the number of people who have taken an interest, many who have donated online who I do not know, and I would like to tell them how much it helped me in completing the race despite my “dodgy knees”.
If anyone would still like to donate to the charity they can do so by going to http://www.justgiving.com/Daniel-Broom

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..

Lukes Uncle Dan Broom is doing the Great South Run in Portsmouth tomorrow.

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/

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.

Luke is still in Southampton PICU and we are waiting to hear from GOS to see if there is anything they can do to help him.. this will probably be Monday now.

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/

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!