Release of The Temple St Two!

Yes you read correctly - We are being discharged tomorrow!! I can't quite believe it, in fact I'm in disbelief. I had been almost afraid to hope this would happen and had really prepared myself for Christmas dinner in Temple St.. Rory has made miraculous progress since last weekend and we are now ready to fly solo. We will continue to attend the hospital 2 days a week in the short term, to make sure his bloods and medication stay on track. It will only take the tiniest glitch to have us readmitted, but that's not something we haven't already lived with for the last 4 yrs. Rory won't be able to mix in large groups for a while, so school and public transport are out 'till well into the New Yr. Apart from that, he's now officially home use friendly and ready for some Christmas cheer!!

It will be an emotional day for us all - I wouldn't be surprised if the ward staff are offered counselling, for Post Rory Discharge Stress Disorder (PRDSD). I'm told symptoms can include watery eyes, wringing of hands, lumpy throats and, in severe cases, uncontrolled weeping!

Take a bow, all of you, and take credit for the part you've all played in this miracle. Your prayers, of every denomination, your good wishes, practical help and general out pouring of support have contributed hugely to this amazing day. It has been wonderful having your company on this roller coaster ride, your solidarity has kept us sane. Thank you all sincerely. We have some way to go yet on this journey, but each step is considerably eased by the knowledge that there is a large community out there wishing us well.

Here's hoping this is the start of a new adventure called normal life ....

Cheers,

Ann

Brief update

Hi All,

Just a quick note to let you know that things are still going to plan - blood results are encouraging. We may also hold off on starting the new meds for a couple of weeks to give Rory's system a break. Once again praying like mad and keeping everything possible crossed, there's a chance we'll get home for Christmas!! Too tantalising to think about really!
Cheers
Ann

Reunion

This is the first time we've all been together in a month. It's such a long time when you're only small. Such was Rory's delight at seeing his Dad and big sister, that I can now report a serious drop in nappy output and an even more significant improvement in his blood results. An improvement that meant we could even visit without wearing masks today. I am almost afraid to say that we may have turned a corner! Tomorrow will be a real telling point. Then hopefully, if we have finally settled down, we can start to do it all over again with the next batch of anti-rejection drugs! Apparently, this lot are even more notorious for being a very moving experience! We'll have to re stock our supply of nappy rash cream! Round one definitely goes to the drugs, I just hope round two goes to Rory!

Jess took some time out from curing her brother to have some fun with her Dublin friends on Santa's steam train. A well deserved treat for the world's best big sister.

Cheers,

Ann

Slow progress

Hi All,

We're still hanging in there, can't really say that the poo situation is any different - maybe marginally better but to be honest I'm poo blind at this stage. Every nappy has kind of merged into one - I've lost my ability to distinguish between watery, mucousy, extremely runny, slightly thicker or even my own personal favourite, pasty! At least we know now that we have over shot on the dose of anti rejection drugs as Rory's immune system is now temporarily shot! He is in complete isolation and no one can enter his room without a mask!- However, his bloods are already improving as we have significantly cut the dose so we would expect to see a big improvement in his immune system in the next few days.

I have been, as always, so impressed by the attention to detail carried out by the team. They are intimately acquainted with every nappy and what drugs or feed recipe preceded it. Everything is plotted in anorak detail, it puts trainspotting in the ha'penny place! Nothing in Rory's care plan is changed without detailed discussion with me and my opinions are always taken into account. If you do have to be locked in a hospital room for weeks on end it is very helpful to have a say in what's happening.

When I get restless it helps to think of the longer term aim, it's worth putting in these frustrating weeks to ensure the longest possible life for this amazing kidney. When we are finally released from our incarceration - you won't see us for dust. Take note all of you out there with spare rooms in far flung places you may want to review any hastily issued invitations, once we get travelling, no guest room on the planet will be safe!

Cheers,
Ann

Hi All,

It's been a pretty frustrating few days for everyone here - except Rory, he's blissfully oblivious to the cat and mouse games being played with his medication and feed. Each change to his routine - (and Oh My! there have been many!) has a knock on effect on a whole host of other issues. His cocktail of meds is still resulting in the runs with the low level absorption of his anti-rejection drugs. So each poo is documented, weighed, inspected, discussed at length in terms of colour, texture and volume. I've become quite the expert. The poo patrol team had a long conference yesterday and we feel we may have a lead on the right combination of drugs, feed and supplements. It's like being in the middle of an extended game of Immuno-supressant Cluedo! Is it the Codeine in his colon with the peptide feed? Or the Acidophilus in his Alimentary Canal with the 30ml flush? I fear we've been a bit more Clousseau than Colombo lately and would really want to up our game here if we are to crack this case.

In the meantime Rory is busy being charming. I've really noticed a huge improvement in his ability to concentrate and complete tasks since the transplant, he seems much more focused and organised. He has school everyday now with one of the wonderful in house teachers from the Temple St primary school, she has also noticed a keener focus. So it's not just his mammy saying he's wonderful!

The Galway gang are doing well and planning a visit to us at the weekend. It'll be lovely to have all four of us together again, for the first time in a month.

Cheers,
Ann

First outing!

Hi All,
I enjoyed my dose of Galway tonic, and verified that Niall is being well looked after by highly qualified nursing staff! Big sister nurse Barrett is playing a blinder and Dad is looking all the better for the excellent quality of care he's getting.

I'm back in Dublin with boy wonder. He's in top megawatt Rory form. Delighted to see me back, although, I suspect he didn't miss me too much judging by the orderly queue of ward staff outside his door waiting patiently for their turn to play with him! Medically, things haven't really moved on much, but his form, energy and colour etc are much improved. We're still battling the runs and the consequent mal absorbtion of his anti-rejection drugs. We are making progress, but it is frustratingly slow. On a brighter note, today, Rory had his first trip outside the hospital in 3 weeks! A friend very kindly whisked us off for a stroll in the Botanic gardens, a favourite haunt of Rory's as he loves terrorising the local squirrel population. An enthusiastic Yahoo! was heard from the back seat of the car when he realised our destination. The very blustery conditions certainly took the edge off any hosptial cobwebs.

So tomorrow we battle on again trying to lower the frequency of his over zealous nappy output and increase the levels of those all important anti rejection drugs in his blood. Fingers crossed we make progress as this is the only thing stopping us from going home.

Cheers,

Ann