Wednesday, 28 November 2007

Pause

Hi All,
I've arrived safely in Galway and all here are very well. It was very tough leaving the little man behind. However, I've just phoned the hospital, and Rory's doing very well. I'm going to take some time out and might not post again 'till the wkend.
Cheers,
Ann

Tuesday, 27 November 2007

Hi All,

Not much to report today, except that more of the old Rory is appearing everyday. His stamina is improving, along with his attention span and his interest in his toys. The two main issues at the moment are; the runs -although we maybe getting to the bottom of it (pardon the pun) as slight traces of a bug were detected in his samples. Not enough to warrant any treatment but a bona fide bug none the less! The other issue is getting the dose of anti rejection drugs right; too little and they're ineffective, to much and they can be toxic to the kidney! Don't you just love these medical conundrums, they're just so darn definitive, it's a good solid 'either or' situation! Neither of which is desirable! Of course his intestinal turmoil is also affecting his absorption rate of the anti rejection drugs, and any antibiotics we could use to give the gut bug the old heave ho, well, they would mess even further with the absorption rate of said anti rejection drugs. So there you have it - the dilemma du jour, all suggestions on a post card please! I think this is the honours paper in transplant science, I wonder is too late to change to pass? Luckily I'm getting extra grinds from the team, who are an inspiration in the art of patiently answering the same stupid questions over and over again.

As you may have gathered, my brain is now fried. I am very glad to be going back to Galway tomorrow, to unscramble the circuitry and spend some quality time with Niall and Jess.

Cheers,
Ann

Monday, 26 November 2007

Sense of humour returns

Hi All,
(Sorry about the layout today but am having a spot of blog bother!)
Medically however, things are still pretty much going to plan, we have negotiated a lower volume of fluid intake for Rory which, mercifully, led to a consequent drop in output. As you can see from the photo, his sense of humour has also returned in earnest. Hearty chuckles could be heard from cubicle 9 today. We have also started the campaign to Free The Temple St Two! We're not planning any militant action just yet, but we may have to review this policy if our demands aren't met within the next few weeks. Cabin Fever is setting in - its intensity is directly proportional to Rory's increase in mobility. I would fear for the safety of staff and other patients if it is allowed to continue unchecked! New Bob The Builder figures had to be called in as back up today to quell the unrest. I smell busy times ahead.
The Galway advance party are also twitching so I guess we must all be on the mend.
Cheers,
Ann



Sunday, 25 November 2007

Sitting up


Hi All,


For those of you suffering withdrawal symptoms, sorry for not 'blogging' yesterday, exhaustion took over, I'm suffering from milestone meltdown! Here's yet another two for the trophy wall, Rory sat up unaided and took his first few steps. He ignored the programme set up by the physio and just got on with it himself, bypassed the boring bits and went straight for the end result, very typical Rory! The current challenge is to tolerate the litres of fluid being pushed into his little system everyday! He is now being expected to tolerate almost 5 days worth of fluid in only 24 hours. It's taking binge drinking to a whole new level! Not to put too fine a point on it, but, what goes in, must come out! I'll spare you all the details, but suffice it to say, I'll be buying shares in Pampers first chance I get! The banana milkshake has had some effect but I think the root cause of his over eager evacuation is probably just sheer volume. It'll take time so I'll be maintaining my Sudocream vigil for the foreseeable future!


Reports from the resting troops in Galway remain chipper, the home fires are burning and the new TV remote control is working overtime. I don't see that remote lasting long once Rory gets home though, he was named as the prime suspect in the disappearance of the last one. Foul play was definitely suspected!


I hope to make it West myself for a few days this week. It's been two whole weeks since I've seen Jess, it feels like two years, I miss her. I also really need to recharge my batteries and refresh my wardrobe, I'm getting really sick of everything in that suitcase.


Cheers,

Ann



Friday, 23 November 2007

'Fraid we've gone all normal


Hi All,


It's fairly safe to log on today - no tissues required. Rory's progress is continuing well as you can see. He's a long way from full Rory throttle yet but making very brave efforts. We've started physio to get him back on his feet, his muscles are all quite tight after his 10 day hibernation. His system is still in a heap from the surgery and the new barrage of anti rejection meds. I've changed a lifetime's worth of dirty nappies of all shades and sizes in the last few days. Tomorrow's trial cure is the consultant's own personal favourite for this type of situation.....banana milkshake! So my homework for the morning is to whiz up banana and natural yogurt! This will all go down his tube as he is still resisting anything by mouth! As you may have guessed we have pretty much thrown the kitchen sink at this problem so it's back to the old reliables. I'll be submitting a paper on it to The Lancet if this one works! All other non pharmacological suggestions greatly appreciated by the way.


Niall's recovering well, busy receiving guests bearing liquid tokens of their esteem for his brave act of generosity. Like the true selfless being that he is, he is doing so without so much as a whimper of complaint.
Cheers
Ann


Thursday, 22 November 2007

First Wet Nappy Ever!

Hi All,

I know I said I would spare you the emotional milestones but allow me just this one more!

I changed my son's first ever wet nappy today! OK, so it wasn't completely normal, the urine did exit through a whole in his tummy. But hey, it was a nappy and it was wet!! The urine bag was removed today without much fuss, of course jelly legs here had to leave the room while they did it I had worked myself up into quite a squeamish lather! Now Rory is left with a little slit like incision on the lower left side of his bellybutton, out of which the urine just drains constantly. There is a medical term for it but I can't even pronounce it never mind spell it. From a home management point of view this will now be collected by an absorbent pad slotted inside a regular nappy. The worrying prospect of me having to acquire a whole new set of urine management skills has now been put to rest. What a relief, as I am an old dog and these were potentially new tricks! Rory seems very comfortable with the whole set up, wincing only slightly when the pad was changed, but he won't feel anything once the wound heals. He was a shade sunnier today than yesterday, asking for snuggles and even managing some quality floor time with Scoop, Muck and Dizzy.

Of course the other main event of the day was the return west of the right kidney! Niall was formally discharged from the excellent care of Beaumont Hospital. It was lovely to think of both he and Jess together again at last. Although I will really miss his company here in Dublin, I won't miss the trek between the two hospitals. He is now in intensive care in Father Griffin Rd., where I'm sure, in due course, he will need to be surgically removed from the couch! I really hope there's some quality footie on the box for the up coming weeks!

Keep the comments coming they're a tonic.
Cheers
Ann

Wednesday, 21 November 2007

A Fairly normal day

Hi All,

Reading your comments, I realise that after all the emotion of the last week, we could all do with a relatively normal day. So, with that in mind I will spare you all your morning weep into your cornflakes and tell you that today passed quietly without any major emotional mile stones. I personally don't think I could have done another one. I need to psyche myself up for my new found normality! Rory was fairly comfortable today, although, he was more lethargic than yesterday, which was to be expected. Our aim for the next few days is to get the right balance between pain relief and easing off on the sedation. It was the first day we heard any complaint out of him, so we are still tweaking the pain killers. We had pretty much gotten on top of it by this evening as I left him, he was hugging his teddy and watching the Simpsons. Kids who battle illness are incredibly inspirational, they are completely honest about how they feel. When Rory isn't feeling well he just shuts down and concentrates all his energy on getting better, and as soon as he feels better he just gets on with the business of having fun.

Patient senior was in top form today, he even made it all the way over to Temple St on his own.
He has been given the all clear to check himself out tomorrow, so look out Galway he's on his way home! It'll be great to get the advance party west, we're all really missing Jess. She's having a ball being very well cared for by all her aunties and grand parents. She's very excited that since Rory won't need his wee wee machine anymore, we'll all be able to go on holiday together for the first time. Ah yes the sweet smell of normality....

Cheers,
Ann

Tuesday, 20 November 2007

First hug for a week!!



Hi All,

What can I say about today except Thank You! Thank you to whatever deity you're having yourself, thank you Temple St, thank you Beaumont and thank all of you for praying. It sounds so simple, so inadequate yet no other emotion even comes close to describing the emotional depth of gratitude felt today. Rory was formally discharged from ICU and welcomed with open arms, red carpets and brass bands back to the renal ward. It was literally and emotionally a very moving experience.

He arrived back to a hero's welcome, eclipsed only briefly by his father's arrival. The reunion between the two was fabulously informal! A groggy yet gleeful Hi Dad! from Rory and a pained,lovely to see you lad, but those stairs nearly killed me, nod from Niall. Between the move and the lack of pain relief both men looked the worse for wear. So I was mercifully saved from another excuse to weep copiously! It would have seemed just a tad over the top given the lads that were in it!

Rory's afternoon was a mixed one, the initial euphoria gave way to a troubled morphine downer. This was relieved in jig time by the, as ever, amazing staff. He went from shaky, can't move from the bed status, to asking me - can we go out in the buggy within seconds once the new meds kicked in! Then the team met and discussed his normal blood pressure, his normal oxygen saturation's and his normal fluid intake volume! We're all so normal now I could puke! I've just about got my head round the BP and the sats, but a fluid intake of 12oo ml in 24 hrs nearly floored me! This is the lad that had 450ml a day max for the last 3 yrs, now they want us to cram a whole weekend's worth of feed into him in a single day! Like I said before, this whole normal lark is going to take a whole lot of getting used to!

Niall is just as bemused as me, but I guess it must feel really satisfying to know that without his incredible bravery, this whole normal label could not have applied to our son. The more I live through this, the more I realise that a living related organ transplant is the most perfect meeting of science and the beauty of the human spirit. Long may they continue to compliment and enhance each other.

Cheers
Ann

PS Sue, can I just say again, those cakes today - seriously quality goo!

Monday, 19 November 2007

Ventilation is so yesterday!

Hi All,

I'm thrilled to reveal real progress today!! Rory was extubated at 12.30 today - the ventilator tube was finally removed and he continued to breath beautifully on his own. His voice is still very low and he is quite groggy but like a true trooper, the first words he uttered were Angelina and Scoop - for those of you not familiar with 4 yr old popular culture, that loosely translates as follows: I want to watch my Angelina Ballerina DVD followed by a few episodes of Bob The Builder shaprish please.

This was followed by an emotional reunion with his old blankie and also a brand new Lofty, which I had purchased in a haze down Henry st on the day of his operation. It is absolutely wonderful to have our old Rory back. It had struck me yesterday how much I had missed his voice, as he had been completely silenced by the ventilator. He was a lot calmer and more settled than expected, happily settling into watching his DVDs and checking out his new toy. Of course news of his tube release spread like wild fire round the hospital and all his fans from the renal ward were beating a path to his bedside - we almost had to call security!
We are hopeful to have him back among his mates on the ward tomorrow, it all depends on how his night goes. I'm bracing myself for a busy week ahead.
Niall is much better also. Sadly there was no release for him today as he is still on I/V antibiotics and will have to stay put 'till Wed at the earliest. I was worried he might become institutionalised. My fears were put to rest during his daily constitutional ( his most adventurous to date) when he managed to leave the ward and make it as far the main hospital door without so much as a rise in pulse rate. His first foray into the outside world was so encouraging that we're even discussing a visit to Rory tomorrow. It's hard to imagine how he has gone through all that pain and
not yet seen the miraculous results of his generous gift of life.
So whatever you lot are putting in those prayers, it's working. Can we be greedy and ask you all to continue please - just for a little while longer....

And to those in Dublin offering to meet for coffee - yes please, but can we go somewhere that also serves really gooey cake? Please keep up the blog comments they are a life saver.
Cheers,

Ann




Missing the sedation

Hi All,

The boys are well and I think both of them are itching to move! Rory was very awake today which was both a blessing and a curse for the poor little mite. They're weening him off the sedation with a view to taking him off the ventilator. The downside of that is, he's more aware now, and the tube is driving him insane. He is making serious attempts to take medical matters into his own hands and yank the whole lot out. While I admire his determination and self preservation, I'm not really inclined to encourage this course of action as it is not without it's problems!! Not the mention the fact that he could be barred from the ICU for life!! However Bob the Builder came to the rescue in the form of 3 DVDs and a large screen TV. This is a tricky time, he's fitter and less compliant but not yet ready to fly solo. He's also not willing to listen to reason and who could blame him.

Niall is progressing well, talk of discharge tomorrow continues but no conclusions have been reached - we'll know more in the morning. The ward, which he had to himself, is now starting to fill up so suddenly the accommodation has lost its sheen. Auntie Mags paid a flying visit again today - armed with delicious homemade cakes- she has truly embraced her inner domestic goddess since discovering that Nigella book. She's off to Cuba in the morning for 3 months, we will really miss her and her lemon meringue pie.

So fingers and all other bits crossed we'll see some movement closer to the door tomorrow.

Cheers
Ann

Sunday, 18 November 2007

Settling into the Routine

Hi All,

Another day down and some more improvements to record. Niall can be now seen doing laps of the ward on foot, tickets available on line and from Ticketmaster - book early to avoid disappointment! He's almost back to his old self between pain killers, he slips a bit just prior to the medication, but overall, he's definitely more user friendly.

I've settled into a sort of routine, I usually hit the ICU just after breakfast, then I try to meet someone for coffee - outside the hospital - the cafe in the Hugh Lane Gallery in Parnell sq is becoming a firm favourite. (By the way if anyone out there knows any of the staff could you explain that I am not some crazy lady? You could explain that I'm just going through a difficult time and that I speak very highly of their scones!) I have another visit with Rory before I make my way to Beaumont to see the kidney's former owner. Back into town round 7ish for dinner and back up to spend the evening with Rory.

The main man is still peeing for Ireland, 150ml in one hour today - a new personal best for this talented young fella. He's still ventilated and as usual we will revisit that situation tomorrow. His fluid balance is getting closer to the desired happy medium, but Rory being Rory, won't be pushed into doing anything! He's taking his own time and has chosen the scenic route through this week. His central line was taken out today so we are at least one wire down on yesterday. His BP has been classic Rory - all over the place, thankfully we all know his form and we try not to get too excited about it. Generally you could say that things are still going to plan - but I think the schedule is taking a bit of a hammering.

We're not out of the woods just yet, but lets just say we can see the clearing with the picnic tables just up ahead. Don't take your feet of the prayer pedals yet.

Cheers
Ann

Friday, 16 November 2007

Mist lifting!

Hi All,

Not much news really since I last logged on earlier today. Just back from Beaumont where Niall is a much happier camper than yesterday. He's off all drips, tubes and wires of any description and looking all the better for it too, I might add. They're even beginning to discuss discharge over the next few days, which is hugely encouraging. Rory's progressing according to plan but I think he's really itching to get out of that bed. He's still sedated but it's tough on him having physio to shift the fluid - and then being stuck back to the bed. His new kidney is still working a treat with amazing blood results, the like of which we have never seen before - well within normal range - a term we have never before heard uttered in relation to Rory! He just hasn't done normal before - I hope he doesn't have problems adjusting to this new found normality.
I think we all will - normal has been a pretty elastic term in our house for the last 4 years.

Cheers
Ann

Coming out of the Fog

Hi All,

Things are much more settled today for both the lads. We were told that day 3 can be tricky and I think I can safely say (for Niall anyway), that tricky doesn't even come close to describing the day he put in yesterday. Rory had a settled night, the BP and fluid balancing act is beginning to find a happy medium - don't want to speak too soon though as this is Rory we're talking about after all! He is still ventilated and the plan is to continue like that until tomorrow when we will revisit the plan! He has a little fluid on his lungs which is totally normal so we just want to reduce his fluid intake and increase his urine out put - which sounds quite easy, but from what I've witnessed, involves quite a lot of hard sums! The pee is still flowing beautifully and is a delightful shade of autumn amber, full bodied and by all accounts has a very good nose! My clever son is multi tasking - peeing and breathing simultaneously.

I'm feeling less punch drunk and am now understanding at least one word in most sentences uttered to me by the team. I'm trying to get as much rest as possible to be ready for that little warrior when he wakes up. I'm sure he's going to be less than impressed with how he's going to feel. It'll be a case of crash helmet on, head down and get on with it!!

So prayers still required for another wee (pardon the pun) while please, and again the comments on the blog are becoming the highlight of my day!!
Cheers
Ann

Thursday, 15 November 2007

Hi All,

Day 3 is behind us and we're still in pretty good shape - considering! Niall had the worst day today due to a recent separation from his morphine pump. The pain has really kicked in. It's very tough for him but news of the litres and litres of that amber nectar that Rory is producing is helping. I'm a bit like a spare wheel at the moment as there isn't much I can do for either of them. Rory had another ultrasound on Niall's old kidney today and they said it was very good looking - so at least now we have clinical proof that Niall's beauty isn't just skin deep!!!

Rory's continuing to produce the goods at the rate of around 80ml per hour. His blood pressure is stable (ish) and although still ventillated, he is breathing on his own. Even while heavily sedated he was making attempts to get out of bed. Horse's doses of sedation and he still wants to run a muck! God help us all when he is back to full on Rory power!

No date yet for moving him out of ICU, they are working at getting his fluid balance right - which is a question of trial and error, but he has made a very good start. The team are with him round the clock and are, as ever, attentive to our every need. Their vigil is constant, caring and utterly awe inspiring.

All your messages are fantastic - I really look forward to logging on. It is hugely supportive to know that so many people all around the world are thinking of us. I will have more photos soon when the boys are back to their photogenic best!!

Cheers,
Ann

Wednesday, 14 November 2007

Still Peeing

Hi All,

Really great to get the comments from you all they're a real boost on these long days.
Rory's still peeing like a race horse here- Chateauneuf de Barrett '07 is proving to be an exceptional vintage!! The kidney's previous owner is getting on very well without it- no separation anxiety detected just yet.
There's a palpable air of excitment here in Temple St and his old freinds from Crumlin are sending messages of support too.

It's a waiting game now over the next few days- Rory's still ventillated and heavily sedated (wouldn't mind some of it meself at this stage), it's a question of getting the fluid balance right and letting the kidney settle into its new home. It's probably in shock from having to downsize so drastically - it must be the renal equivalent of moving from a five bed detached mansion to a bijou studio appartment! Mind you the room for expansion will be endless once we get the little lad eating!

Keep up the prayers don't get off your knees just yet!
Cheers
Ann

Pee Day

We're all just about still standing here. Niall and Rory are both very stable. Rory is still in ICU which is to be expected after all he has been through. Niall is bonding well with his morphine pump and looking great after his ordeal.

They both went to theatre round noon with the kidney going into Rory shortly after 5pm. It had been rushed through Dublin traffic at breakneck speed from Beaumont hospital nearby.
We had an emotional meeting with the transplant team at 7.30pm when they assured us that all had gone well. Now all we had to do was wait for the urine to start to flow. Rory's bladder had to be bypassed, it's not quite ready to be plumbed in yet, he has an interesting bag on his abdomen to collect the urine. There was an anxious hour in ICU as we waited to see the golden liquid flow into the bag. I couldn't bear to look! Mags took matters into her own hands, massaging his kidney points until miraculously it started to flow, and flow!
Almost 2 litres in less than 24hrs! Not bad for a learner!!

It was the longest day of my life, truely hellish. Fortunately I was supported by an incredible team of people. Auntie Mags played a blinder with tissues and tea on tap. It seemed that the entire staff of Temple St hospital held their breath for the 7 long hours of surgery with many of them not wanting to go home after their shifts until there was news. It has been truely humbling to be around these people, their skill at their jobs is second to none but their humanity has left us lost for words. This is one area of our health service where nothing short of excellence is tolerated.

The messages of good will are a huge help - sorry if I don't always reply, I'm not often fit to talk or text, thank you all so much for your support it is invaluable.

Cheers
Ann

Tuesday, 13 November 2007


This is the little warrior just before going to theatre checking out his DVD viewing for later

Transplant Day

18h30 in Dublin. We're over half way through the day and it has been a marathon, very, very, tough. Not over yet. Niall is out of surgery - minus a kidney and it is now being transplanted into Rory. I'm desperately trying to fill these last few hours! Hope to log on later. Don't ease off on the praying just yet!

Cheers

Monday, 12 November 2007

Last Dialysis Session


Hi All,


We've reached the eve of the big day.....


He's the two men of the moment saying goodbye to Dialysis for the last time.
Thank you so much for all the messages of support.
Cheers,
Ann

Saturday, 3 November 2007