A minor(ish) hitch

Over the past few weeks living with Jack’s kidney transplant has started to feel like normal life for us.

His main immunosuppressant, Tacrolimus (Tac) has to be taken on an empty stomach – so 2 hours after food and then he can’t eat for an hour. Juggling this around school can be a bit of a pain. Our solution is for one of us to get up at 6am to prepare Jack’s favourite breakfast (was cheese on toast, now it’s cheese and ham toastie – spot the theme 🙂 which he has in bed with a cup of tea and his other meds which need to be taken with food!!

Not wishing to be accused of favouritism we feel duty bound to also provide Harry with his drink and breakfast of choice (Hot chocolate and porridge). It’s starting to feel like we’re running a hotel room service every morning. The words ‘rod’ and ‘own back’ are springing to mind.

On the plus side our resident teenager, Karim, is still dead to the world at 6am and it has not occurred to him to put in a breakfast order!

A couple of weeks ago Jack developed a horrible sore throat – the whole thing just looked totally swollen and covered in pus. Yuck. It was a secondary infection – the main problem was the EMV/CMV viruses which were passed to him from me in my blood and tissue. One of them (can’t remember which) causes glandular fever – I must have picked it up as a child when it just makes you feel a bit grotty for a few days as opposed to as a teenager or adult when it can be horrible. Anyway – the virus had gone crazy in Jack which, if left unchecked, can cause serious problems such as lymphomas. If he were to get those they would have to drop his immunosuppression which would then put his kidney at risk.

As usual the team at GOSH were straight on the case and ordered one of us to go into London one Friday afternoon to collect some hugely expensive (and therefore hard to acquire) medicine for him. I gamely volunteered in the sure and certain knowledge that I would be presented with the opportunity to have a spin around the shops at the Brunswisk Shopping Centre while I waited for his presciption to be filled. Tragically, despite trying on a number of items, nothing took my fancy – not even a new nail varnish – and I came home clutching only the medicine much to Mark’s relief.

Thankfully this medicine appears to be doing the trick and they have also scanned and checked his eyes/liver/spleen/abdominal blood vessels and of course the good old kidney so see if the virus has affected them in any way. No on all counts and his new kidney still looks awesome.

Finally, we have met with the BBC film maker who was at GOSH last year and he showed us the footage of us that he has included in his documentary. It is just a couple of minutes spread across the begining, middle and end and Jack provides a useful backdrop for the 3 main stories being followed in the film.

It is to be shown in March.

Jack’s back!

Excellent.

Jack is now into his second week of school and I have returned to work (albeit on reduced hours for a couple of weeks).

Jack (and his brothers) were overjoyed that the start of term was delayed due to the snow and they made the most of it.

When we had snow last year we took Jack sledging twice – one time he wouldn’t get out of the car and the other time he wanted to stop after 2 runs down the hill – I was furious at his lack of enthusiasm!

 This year couldn’t be more different.

He went out every day, flinging himself into the snow, rolling giant snowballs, throwing snowballs at his brothers (and parents) and sledging for England. Our main problem this year (apart from Harry knocking himself unconscious by sledging down a bumpy slide) has been getting him off the sledge!

Dare I say that life is starting to feel pretty normal again. Jack has clinic on alternate Tuesdays and Thursdays, so this week we have no trip to London. Fear not readers – this does not mean a reduction is shopping opportunities.  I have been jolly busy during the afternoons on my half days  and have a couple of pairs of beautiful new jeans and impractical but fabulous shoes to show for it.

I’ve cleverly hidden the shoes under the bed and will produce them one pair at a time  – I expect Mark won’t even notice……….

Finally – Jack is going to be on TV as his story will be a (small) part of a BBC documentary on the work done at Great Ormond Street. There will be one hour on the Intensive Care ward, one hour on the Cancer ward and one hour on the suberb work done on the Renal Unit.  I will publish the details of when it will be shown and we will brace ourselves for the onslaught of paparazzi ……….

2010 update……

HAPPY NEW YEAR!

I’m not sure if anyone is still following our blog but here is a quick update just in case…..

Jack is generally doing well. He has his stent removed on the 22nd December – which required him to be knocked out. They peformed a routine biopsy on his kidney at the same time. So we had a long day at GOSH – but it was lovely to see all the familiar faces so we made the most of it.

There was no problem when he woke up so we departed the same evening and life has continued in a relatively normal fashion, albeit we have regular trips into London for transplant clinic.

The biggest challenge with Jack at the minute is reminding him not to be leaping about like a nutter – and trying to get a word in edgeways as he has got LOTS AND LOTS to say.

I took this photo of Jack the week after we left Great Ormond Street, If you are reading this and you ever find yourself confronted by the prospect of kidney transplantation this is how you can expect to look about 4 weeks after your operation (if you are a 10 year old boy!)

Help Jack ‘Make a Wish’

Can you help Jack please?

Due to the nature of Jack’s illness the Transplant Team at GOSH are putting him forward to the ‘Make a Wish’ charity which grants wishes to children with serious and/or life threatening illnesses.

Jack needs to think of 3 wishes – different in nature – and they will try to grant one of them. It could be things such as meeting a celebrity, going to an event or seeing a show being filmed  – anything really. (Note that family trips to Florida are only for those with terminal illnesses).

We are really struggling to think of 3 good and different ideas – at the minute Jack has come up with meeting Gok (and hopefully his naked army) or seeing an audition of ‘Britian’s got Talent’ and meeting the judges .

If we can think of something really innovative it will significantly improve his chances of having that wish granted so please post your ideas in comments below………….

We’re home!!!!!

I’m delighted to say that Jack was declared able to come home on Friday as we are now down to 2 clinics per week. His creatinine has crept up a bit this week (from 68 to 75) which is a bit worrying but may be a blip and/or part of his normal range – the team at GOSH are sticking to their original plans for Jack but it could all change depending how his creatinine looks on Tuesday.

It’s nerve racking to be honest – I felt very emotional to be leaving the safe bubble which is Great Ormond Street  – it was good to know that the expert team who have been caring for him were on the other side of the road……

Our week in the patient hotel has been a very pleasant one. We made a couple of outings to Oxford street (in a taxi) to buy DVDs and games and books as Jack is motoring his way through books at the moment. On Wednesday we had a visit from Jack’s old Head teacher, Penny Hindle, and his old year 2 teacher (Valerie Bullock). We had a delicious lunch and Mrs Hindle threw herself into helping Jack reach his daily fluid target by challenging him to a race to drink a whole glass of water – I wonder if she’ll still be doing that when he is 18 – with pints of beer! How lovely of them both to make the effort to come into London – we had a great day!

Other than our visitors the highlight of our week has been ‘Kirstie’s Homemade Christmas’ on Channel 4. I had no idea that Kirstie Allsop was such a gifted comedian – on several occasions Jack and I were crying with laughter – the idea of avoiding the High Street by blowing your own glass baubles (a snip at £20 each) was a particular favourite. Some of Kirstie’s ideas for family gifts were also the source of hilarity – particularly for Jack as he imagined my response if his father were to give me a jar of homemade chutney ‘all wrapped up with love’  instead of items from the extensive wish list I have issued to him.

The next important day on Jack’s transplant calender is the 22nd December when the stent in his ureta will be removed and there will be a routine biopsy on his new kidney. He will be knocked out for this procedure but he will only be in for the day.

Weekend release

On Thursday Mark and I completed our ‘handover’ and Mark departed to Oxford, work and (some) normality.

Jack and I had a relatively busy day – starting with a visit to clinic so they could examine the contents of his dreaded wound drain bag. This was followed by a visit from my brother, Mark which was lovely; and then a trip over the road to GOSH where we both had MRI scans as part of the research project that we have agreed to participate in. Jack was as cool as a cucumber in the scanner and did not freak out at all….I would expect nothing less from my lion-hearted son!

Here are the pictures from that scan.

The more observant amongst you will notice a difference between my most recent scan and the one taken on the 12th November.

Here is one of Jack’s native kidneys. Looking at the size of them, I salute them for sustaining Jack in such a robust fashion for nearly 10 years!

And here is one of Jack’s new kidney. It has been implanted lower down in his abdomen than his native kidneys sit – to the the right of his bladder.

Thursday concluded with the removal of Jack’s wound drain. Crikey, there was a lot of tube in there – it just seemed to keep coming. I have less than fond memories of my own wound drain being pulled out – not a painful experience but a deeply unpleasant one.

For the first time in 6 months Jack doesn’t have a tube hanging out of him and he has a new sense of gusto now he is not worrying about pulling his drain line. I’m going to struggle to keep up with him over the next couple of weeks……

On Friday morning we had another appointment at clinic and were given the welcome news that, if Jack’s creatinine was stable, we could go home for the weekend.

HURRAH!

In addition to this good news Jack was looking forward to a visit from his friend, Inigo. In fact he was so excited he accidentally did an hour and a half of maths to make the time pass quicker…….many thanks to Inigo and his mother for the lift back to Oxford.

It was strange to look at the dialysis machine in his room and not have to start lugging bags of fluid out of the garage and start washing my hands to set it up for the night. Those days already seem a lifetime ago – hard to believe it is not even 3 weeks.

The day was brought to a suitable climax with more amusing antics from ‘down under’ and the lovely Gino being crowned ‘King of the Jungle’; a good result all round as far  Jack and his brother Harry were concerned.

Back to some routine… I think…

As we enter normality, boredom is setting in. Jack is officially an out-patient. We are attending clinic daily to give blood and record his observations, in the afternoon we will receive a call to inform us of the results, touch wood, we have not had to tweak any of his medication or revisit the ward.

Jack is looking very well and we are managing his craving for food by locking him the cupboard, only joking. He is still attached to the wound drain but the amount collected is reducing on a daily basis, so hopefully this will be removed this week. We have been provided with some dressings, as apparently the drain is nearly coming out on its own accord and not to be alarmed. All his dressings have been removed and Jack has a nice neat scar, if you are squeamish scroll down now.

During the day Jack is working through his homework, we have agreed on a schedule so it’s not all work and no play, and I have upped the speed and incline on my work treadmill, but I’m struggling to get a good signal so have to keep buying cups of tea in the cafe around the corner, shame they don’t do loyalty cards.

Deborah has arrived today, so the plan is for a few days to do a handover, sounds so official, and it will be “I’m a parent get me out of here” as I need to travel to colder climates next week.

Miscellaneous…

 The enclosed is a picture of Deborah’s kidneys, the one on the right (left kidney) is now owned by Jack.

A budding actor in the making !

On Friday, Julie MacDonald, of ITV London Tonight, visited the ward as part of Arsenal’s funding raising initiative. I just wish Jack had worn his Liverpool shirt

http://www.itv.com/london/juniorgunner02429/

Still draining and eating like a horse.

We are back, I had written the enclosed last night, but we had to down tools. The reason for this unexpected return to the ward was Jack started to show some signs of discomfort in the kidney area and was passing blood. In the early hours this seemed to clear up on it’s own accord. All his test results and scans were fine. The surgeon explained that the blood in his urine was mostly likely due to movement of the kidney stent which is a thin tube inserted into the ureter to prevent obstruction of the urine flow from the kidney.

So let’s go back in time…..

Tuesday was pretty mundane, we were hoping to be discharged from the ward, have the drain removed, and move across the road into Weston House, but as Jack is still draining around 100 ml of fluid daily the surgical team decided to keep him for another night. In the afternoon we went out and Jack managed to walk most of way without the aid of a wheelchair. Jack is very conscious of carrying a bag of his fluids on his hip, so one of the nurses provided him with a ‘Man’ bag for his bag, which he models for you below. ‘Gone Wrong’ reckons this be will big in 2010.

Wednesday the rollercoaster ride started to pick up momentum, once again, we started off slowly. Auntie ‘A’ and friend ‘B’ visited with some delicious home cooking which the Honey Monster has already devoured. Due to his steroids, he is continually hungry and craving food every minute he is not sleeping.

So back to the analogy, those who have experienced the ‘Hulk’ ride at Universal’s Island of Adventure, picture the tunnel launch (50 ft), we are moving slowly up the first section of the ride, Auntie ‘A’ and friend have and gone, I look at the drain bag, and think another night on the ward.

We gather speed; the doctors are doing their daily rounds and then whoosh zero to forty mph in 2 seconds. The ward sister and doctor inform us “We can be discharged to the Patient Hotel today and you, yes you ‘Dad’, need to get up to speed with his plethora of medication, today”. Great, we pack our bags, clear the decks and…. find out the accommodation is not available till 15:00. No problem we thought, as we made a cup of tea.

Our bags are packed; Jack is sitting looking at me looking very bored. Thinking to myself “I know, I will take this opportunity to breach the subject of school work”, which Jack accepted, to my surprise, and proceeded to complete his Mathematics and continue writing his story, the details of which are ‘Top Secret’ to those who bought him into this world.

The morning came and went and my watch bleeped at the top of the hour, it was 3 o’clock so Jack, the ‘bag’ and I made our way to the Patient Hotel. As we are scheduled to be for a long period time we have been allocated a flat, which is perfect, has everything we need and more, and will be able to accommodate the whole family at the weekends, which will be nice.

Games Room !

The first night in the flat, feels a bit strange, no nursing staff checking on us or machinery bleeping or crying infants and no ‘I’m Celebrity get me out of here’, how did we cope, you ask, we watched Manchester United get beaten, excellent result !!

Today, we were up early to revisit the ward for Jack’s observations and bloods. A three letter television company was also up early as they were trying film the sun rising over St Paul’s Cathedral from the one of ward windows, but someone seemed to have built a large building during the night which obscured their view!!

Thursday we had our first house guests, Deborah and friend ‘T’ arrived with fresh laundry and a television for Jack to connect the PS3, before you ask there is a television, but it does not permit any external connections. As Jack is now steady on his feet, we ventured out for lunch, minus the wheelchair and Pac Man managed to eat everything placed in front of him.

Where’s our favourite blogger?

Apologies to those of you eagerly awaiting an update from Mark.

Having been discharged from Victoria Ward to a (rather lovely) apartment in the Patient Hotel (still on Great Ormond Street). A minor setback yesterday evening resulted in Jack being back on the Ward for the night and poor Mark having a most uncomfortable time keeping vigil, in a chair by his bedside.

I also had a lousy night waiting for texts from Mark…….. Jack slept like a log.

The good news is that Jack’s kidney is still looking good – the problem was related to his bladder but appears to be a ‘blip’. Both Jack and his Dad are returned to their batchelor pad to have some well earned rest.

I know that Mark has more detailed news and photos. So watch this space.