Salt…Arghh !!!

I was unable to a get a 3G connection late last night, so I’m writing this as Jack sleeps (Tuesday 24 November).

Last night we were asked to relocate to the low dependency section of the ward, due to an emergency case coming in. We both looked at each, tutted, as we were just getting settled for Katie Price to take another challenge, but we took this as a positive, packed our bags, and moved 20 feet. Hopefully we will be in the patient hotel tomorrow, but this is all dependent on the removal of the drain bag, which is still draining.

In terms of his observations everything is looking really good, his Creatinine is consistently at 70 and yesterday’s ultra scan results were very positive. We are still working to get Jack’s blood pressure to stabilise, this is normal post operation tweaking. Pre-transplant he was taking medication to counteract certain chemical deficiencies, but the new kidney is working as designed so the medication needs to be flipped the other way. We also need to manage his salt intake, so we decided to take a trip to the infamous Brunswick Centre and visit Waitrose (there are other food retailers available) to select an evening meal based on our ‘Reduce your salt intake’ pamphlet, what a nightmare. Everything Jack picked up had a weeks worth of salt in it and anything I tried to show him was met with a look of disgust, so he proceeded to wheel himself, angrily protesting, down the aisle. We decided, after much deliberation, on some carrot sticks, some humous and Alphabet Spaghetti (A to M for dinner and N to Z for breakfast.). Deborah has been tasked with arranging some home cooking to be airlifted in.

On the way back to the hospital I decided to take a photo of the lovely Christmas tree (only 30 Days to go), but this very annoying boy with a baguette kept getting in the picture…

A day out in London

This morning I decided it would be a good idea to change my own dressings as I couldn’t possibly wait for someone to help me. I took the opportunity to have a jolly good look at the carnage. Not such a good idea – I’m not going to do that again for at least a few days.

My friend Tess very kindly drove me into London today so I could spend a couple of hours with Mark and Jack while she had a ‘quick spin around the shops’.

They both look great – Mark has got everything totally sorted and is in complete control while I lurch from one chair to another in a rather pathetic fashion. Jack rather reminds me of a coiled spring and I suspect that when his last drain lines are removed he is going to unleash himself on the world in terrifying fashion.

It was also very gratifying to be present during a routine Ultrasound scan – I am no expert but I can now spot a kidey on that screen at 50 paces and Jack’s new one was happily throbbing away. I’ve permenantly got my fingers crossed that it stays that way – me and Mark are both painfully conscious that it is early days…….

I was only able to stay for a couple of hours but it was lovely – I am sure that Mark will update the blog on what they have been up to this afternoon.

Weekend Wonders

You may have already worked this out, but the pictures are crunched in the blog page, if you double click on the image it is displayed in another window, which makes for better viewing.

It is Sunday evening and Jack is watching X Factor, based on my theory Olly will be voted off and this is going to cost Jack ten pounds ,as he selected the Chucky Brothers, but it will be close, I think not. Back to the blog in hand..

Jack had his catheter removed this morning which was a great relief to him, so all that remains his cannula and drain bag. The staff suggested that Jack left the ward for a change of scenery, while his room was cleaned etc, so our wheels arrived and we entered normality for a brief period.

Jack refused to go in this dressing gown as he wanted to be normal, so he proceeded to get dressed in his jeans, t-shirt and pulled on his trainers, The petulance of the boy, I wonder where he gets that from.

On your Mark….

Go (is there no Set..)

Andy is off (literally we got to the shop and it was ‘I want that one’)

Yesterday the Grandparents, Auntie B and his siblings paid a visit, which gave me a chance to take a walk to Covent Garden and have some ‘Me’ time, which was great, thanks. Due to the bad weather it took them 3 hours to get home.

Jack is now on a fluid target of 2.5 litres (minimum), which he is finding difficulty to reach. Ironically, prior to the transplant he struggled to keep to a 1.2 litre restriction.

Seems like my X Factor theory is flawed as there was a loud cheer around the ward as the final vote was announced. It was a similar yelp to those who clap and cheer when the airplane lands, why ?

Back in the City of Dreaming Spires

After a brief stop at Great Ormond Street (thank goodness I put some make-up on) I am now back in Oxford.

Thank you so much to my friends Tess and Ann for providing a very careful taxi service! On my arrival home I found a beautiful bouquet of flowers from my wonderful HR colleagues at Unipart – Thanks! And my friend Victoria brought round some yummy cakes….again, thank you, they are amost all gone now.

It’s fantastic to be home with Harry and Karim – but nerve racking being away from Jack at such a critical time. However, Mark is doing a wonderful job of taking care of him (and of updating this blog) and he is keeping me informed of Jack’s status. I won’t steal his thunder by doing that on his behalf – he is much better at this blogging business.

I was appalled to discover that I gained 9kg (yes – that’s nine kilogrammes) the during the course of last Tuesday. Apparently it was fluid which I assume was intended to make my residual kidney realise it’s lost it’s wing man so needs to work harder.

Also – I looked about 7 months pregnant when I left Guy’s – much of which was air pumped into my addomen during the surgery so they could get a good look at what they were doing. There are only two exit points for that air – so it is a brave individual who has spent any length of time with me over the past few days….. I am pleased to say that I am now deflated and have lost the 9kg; although I still look pretty fat that is just swelling from the operation. Phew.

It is Sunday afternoon and I have been busy trying to relax and do nothing. Not that easy for someone whose idea of relaxation is to bob down to the Gym or go out for a run.

Those of you who know me well will not be suprised to hear that I now extremely grumpy and getting very cross with people trying to tell me what to do. I am wondering whether it is worth the risk of bursting a stitch for the sheer satisfaction of throwing a punch at the next person who lectures me on my recovery.

Today Ann took my to ToysRUs to buy a gigantic puzzle ball – that will keep me in a chair for a while………

That’s it on me – not terribly interesting. Hopefully Mark will update this blog later on Jack’s progress over the weekend.

A picture or two paints a thousand words

Cheese Sandwich !

Jack awoke this morning a little grumpy, so nothing unusual there then. In the last few hours I have seen the old Jack, or maybe that should be the new Jack. He has been laughing and joking, at one point I had to leave, as we were crying with laughter so much it was hurting him, not even sure what we were even laughing about….

Jack is now off the oxygen; he actually removed this himself in the early hours of the morning as the mask was irritating him. The morphine button has been strategically placed so it’s available, if required. He also got out of bed with some assistance so he could get weighed and his bedding changed.

We then had a visit from the physiotherapist to listen to his chest and continue with the bubble exercises, which involves Jack blowing bubbles, as you might have guessed, going “Huh” “Huh” and then coughing, which is working wonders…

Once back in bed he then proceed to asking for a Cheese Sandwich, which he has devoured and is now back on, you guessed it, the Xbox, we will get to the school work, I promise.

Thanks to everybody at New College School (NCS) for the lovely cards.

As I write this the morphine has now been switched off, so things are changing very rapidly.

I spoke to Deborah this morning and she is due to leave Guy’s today, on route back to “the city of dreaming spires”, she will visit Jack.

Jack is vertical, briefly…

After an unsettled night, Jack has slept most of the day. This morning the medical staff was keen to get Jack up and out of bed so he could clear his chest (nothing to worry about, just post op phlegm which needed to be shifted).

He woke around two this afternoon and completed a few levels of Sonic the Hedgehog. With a team effort, Jack managed to, very slowly, rise from his bed to sit in a chair, which is great news. This really helped with his chest and enabled him to cough more easily.

With regard to the transplant, the team is very happy with his progress and his observations are looking very good.

The target for tomorrow (Friday) is to remove his oxygen mask and self service morphine, which is making him feel nauseous and itchy, common side effects, apparently.

I have just had to run out to get a Margarita pizza in time for the “PJ and Duncan down under show”, patient’s orders….. LOL

On the other side of the river, Deborah is also doing very well and the tentative plan is for her to be discharged tomorrow, which is excellent news. She was planning to visit Jack today but I suggested this was probably not a good idea, in her current condition.

Last but not least, I would like to thank the Tasker Family for the lovely bouquet of flowers.

Deborah is out of bed

Deborah is up and about, which is great news.

Post Operation Update

Firstly apologies for the belated update, but Father Time remembered where he had parked the DeLorean and the day went into overdrive.

So how is everybody doing?

Deborah was back on the ward circa 17:00 after a successful operation. She was heavily sedated and understandably very sore, but was able to talk, show off her lovely bed socks and put a request in for a cup of tea. While Jack was in surgery, I popped over briefly to she Deborah on her return from the recovery ward before heading back to GOSH to be with Jack.  Deborah’s Mum (Liz) and Auntie (Barbara) are at her bedside so she is in good hands.

This morning she was feeling nauseous, so they have stopped the morphine and all is well again. She has also spoken to Jack, which brings me nicely onto the recipient.

Jack is doing very well, he returned to the ward at 21:00, again heavily sedated and wired up. Due to the age of the ward the architecture does not easily accommodate modern medical equipment, so his bed is width ways so that all the apparatus can fit in.

In terms of the transplant everything  is looking good, the medical staff  are all very happy with his progress. The kidney is working very well as depicted in the graph below, which shows the Creatinine levels in his blood. For his age this should be  around 50. If we compare this to the figures back in May, which was 900+, we are definitely  moving in the right direction.

Today Jack is very sleepy, but still manages to smile and complete a few levels of Call of Duty between naps. This maybe my chance to beat him at FIFA10, but I doubt that somehow. Well he is sleep now so I’ll take the opportunity to get some practise in.

T-Day has arrived

As I write this entry, Jack is looking relaxed playing on the Xbox and has just been disconnected, for the last time, from his dialysis machine.

Deborah went down to surgery at 8:30 so will speak to, and hopefully see her later.

The surgeon has just visited Jack and the plan is to start the implant process at 13:30, so we are now just waiting; Father Time seems to be walking through treacle this morning.

I just wanted to say a big thanks to Tess for driving us in yesterday.

 

On the shoe and bag front, I’m not aware of any new purchases, but I’m sure Jimmy or Christian delivers!!