Hello Kitty

Last Tuesday, we adopted the newest member of the family. Can you guess which one it is?

The fluffy white one by the way!

I like having a pet, always had one. We had cats growing up, the Dad had dogs. There where also gerbils, a hamster called Spartacus, and now there is Marvin the cat. And what a good cat he is. He still needs to learn some of the ground rules of the house, like no cats aloud on counter-tops and tables, but he has been great with Cathal. Cathal loves him, one of the reasons we decided to get a pet was so that it might encourage Cathal to get moving across the floor, other than rolling. The first day Marvin was home, he was on the couch, Cathal was on the floor, and Cathal tried to pull himself up against the coffee table to get a look at the cat. There was about a centimetre of space between the floor and his bum for 20 seconds.....the Dad and I were floored.....that's the first time he has attempted any kind of pulling himself up. I think we made the right decision. Cathal is also very good at rubbing him, although he does get a little over excited and tends to then hit or grab the cat's skin and pull. And the cat just takes it.

Pheeeewww!

And where did we find such a fine cat I hear you ask?

From the DSPCA. Marvin was abandoned. His right front leg got broken some how, his family brought him to the vet, the vet fixed him up, and then the family would not collect him and refused to answer the phone. He was there 4 weeks before the vet brought him to the DSPCA. In these tough times, people just can't afford their pets, and it is happening more and more. Although I sympathise with his previous owners, I still don't understand how some one can do this. At least they brought him to get treatment, but still.

When Cathal was born, we should have just sent him back too, "Sorry, this ones got a messed up heart, he's gonna cost too much to fix, take him back".

When you take on a pet, you take them on for life....Marvin is only 2, not a very long life so far.

So, to recap, we have a son who has CHDs and downs syndrome, and a cat with a dodgy leg (he has a big limp) which will probably develop arthritis in his old age which won't be covered by pet insurance!!! What are we like?

But, Marvin is the right pet for us, his personality and temperment fits us and Cathal perfectly, it's what's inside that counts :-)

A Very Interesting Talk Coming Up

I am very excited to tell you all about a very generous offer. Victor J Bishop, dad to Emmanuel aged 12, has offered to give a talk on "How to teach your toddler with DS to sight-read". Victor is visiting Ireland to attend the World Down Syndrome Congress with his son, who has been invited to play the violin and give a presentation. Victor taught his son to read from an early age, and has offered to impart his experience and advice to our little Baby/ Toddler and Parent group.
This talk will take place at 11am on Monday the 17th of August at the Carmelite Centre. It will take place during the regular group, so babies, toddlers, siblings, parents, early intervention staff.....EVERYONE....is more than welcome to join in.
I am going to take as many notes as I can in my scrawling handwriting and then copy them up here for anyone who can't make it. There will be tea and coffee and biscuits. Keep an eye on the left hand side for updates on the group and the next meeting date.

Now, on to more important stuff. We are just back from our holidays, Costa del Cork and Costa del Clare. Here are some of our favourite holiday snaps!

Fota Island, in the Rain... it's holidays, where is the sun?

Bouncy bounce
(Fota, Cork)

What the hell is all this golden grassy stuff, this "one with nature"
is not that great Mammy
(Ballymaloe House, Cork)

CHICKENS!
(Ballymaloe Cookery School & Gardens, Cork)

PIGS!!!
(Ballymaloe Cookery School & Gardens, Cork)

DUUUUUCKSSSS!!!!!!!
(Dromoland Castle, Clare)

those are very tall cliffs Mammy
(Cliffs of Moher, Clare)

At last, something I can get my hands into....
(please note, this baby was dry...)
(Doolin, Clare)

Rock pool + toddler = very wet trousers
(Doolin, Calre)

Official Down Syndrome Dublin Parent & Toddler Group

Following on from Ava's Mum's tireless organising, the Carmelite centre will host the first 'official' parent and baby/toddler down syndrome Dublin group meeting on Mon 6th July from 11 a.m. to 1 p.m. Please let me know if you can attend and more importantly spread the word in your services. Siblings are also very welcome. Please bring some small toy or something to keep everyone occupied and a packet of biscuits or anything tasty to keep parents occupied. There is a tea and coffee station there.
The Carmelite centre have stated this is a trial for them too so depending on how we get on Mon 6th of July they will confirm if we can continue to Sept. It would be great if we could get a good number to show up. There is paid parking behind the centre, the directions to get to it are:

Approach Aungier Street from the Camden Street/Wexford Street direction, past the Church and go left at the lights and then immediate left.
There are also lots of buses going down that road, and the Luas is very close by!!!

Spread the word.....and join in for fun, tea and chat

Location shown as point "B" on the map below.

The Carmelite Community Centre
62 Aungier St
Dublin

01 400 5955‎

View Larger Map

A Big Big Thank You to All of You Out There

Finally, with much anticipation, it is my pleasure to announce the grand total of funds collected for my first attempt at the Mini Marathon in aid of Down Syndrome Ireland and Heart Children Ireland.

Drum rolls please...............

865 Euro

Thank you to everyone who contributed, to Kate for collecting at the JH Testimonial back in May (and to all those who donated, to my two cousins who are 9 and 6 years old who dug deep into their savings, to all my family and in-laws, all my friends for being so generous, the Dads work mates for chipping in (including the Enniscorthy branch for secretly setting up a collection box), all those who donated via the magical Pay Pal gadgety thingy that the very clever Dad found and set up for me, to my sister in-law for collecting at her work place and doing the marathon in aid of Heart Children Ireland. I hope I remembered every one.......

Thank You

Bye Bye Crumlin

There are some things that really stick out from CAthal's stay at Crumlin Hospital, those first 24 hours in ICU, getting a birthday balloon that floated out of a box from Ava, getting out of ICU, not being able to hold him for several weeks because he was in too much pain, Cathal getting withdrawal symptoms while coming off the IV morphine, getting a really cool slinky from Noah, the days when we thought his chylothorax would never heal to name but a few. And to be honest, I don't think I can go through them all again, not even to write it all out here. I'm done now with the whole surgery and the 6 weeks we were there. I feel like I've gotten it all out of my system, well, almost everything. Maybe this coincides with writing my last post and sharing our experience, when we had kept it to ourselves for so long. Maybe it has to do with getting the all clear from Cathal's cardiologist a few weeks ago, and the surgical team this week. Needless to say, Cathal is back in action, back on a full fat diet after having had to endure fat free food and fat free milk for 11 weeks, and he is back to his old cheeky self.

But what I really still can't get out of my head is the sight of the parents sitting outside ICU waiting to see their babies or waiting to hear the news. To get to either cardiac ward, you need to pass ICU, and there is always someone there waiting to get in. At weekends it is even worse, news, good and bad is delived outside those lift doors on the bank of seats. I will never forget any of the children that were in ICU at the same time as Cathal. There was Jenny John next to him, a beautiful little Indian girl from Kerry, who's Mother, Father, big brother and big sister were waiting for her to get well. We ended up being neighbours on the ward too, and she got out a few weeks after us. A 6 month old little girl who had surgery only a few days before Cathal, her parents only got 2 days notice that she was scheduled for surgery. She barely pulled through and was discharged around the same time as Cathal. Adam, the little boy who was in surgery the same day as Cathal in the morning and got home a couple of weeks before us.
Across from us was a tiny baby boy, maybe only a few days old, his Polish parents keeping a vigle by his bed side. After a few days, he went to surgery and came back still hooked up to the Heart and Lung Bypass machine. He had two ICU nurses at all times, one for him and one for the machine. He passed away a few days later.
The sixth child in ICU around the same time was a 16 year old boy. The first time we saw him, we were both very shocked. You get used to seeing tiny babies and young children in ICU, but to see an older, bigger child is like glimpsing into your posible future, and all I could think about was Cathal at that age, lying there. Cathal may need a valve replacement in 15-20 years time, and even though this is unlikely to mean he will need open heart surgery, you can't help but wonder if he will visit ICU again. I have this niggling gut feeling that the 16 year old boy had downs syndrome too, which only hits home even more that this could be what is waiting for us. This boy had his entire family close to him. Parents, brothers, sisters, Aunts, Uncles, Grandparents, cousins, all of them would wait to hear some news, for days on end waiting on the ground floor by the fish tank. His parents would take turns to check him in ICU every hour, only staying for 5 minutes at a time. If we found it distressing to see him there, I can't imagin how hard it was for his parents.
He never woke up.
I will never for the rest of my life forget the wail from his mother as she was told he had passed away. Again, this news was delivered in a lift lobby, on a weekend, when the hospital was short staffed, for all to hear.


And then there are the parents and children we got to know on the wards, so many happy endings, a few uncertain endings with trips to Great Ormond Street planned, and one very sad one. All these parents and children will remain with me and I will never forget them.

The last two apointments Cathal has had in the hospital, he has had to have x-rays. Everytime I hit the button for the lift, my heart jumps up into my mouth and I get an unwavering urger to run out of there as quickly as possible. All the feelings come flooding back, and I suppose they always will. But one thing I noiced last week was how quiet things are up there.

3 weeks ago, St Josephs ward was closed, 25 beds closed indefinatly. One brand new surgical theatre was also closed. It is likely another 2 wards will be shut and possible another theatre over the summer months. And all this for a measly amount of 9million euro. This is how much Crumlin Hospital are over budget, so what do you do when you are over budget? Well of course, didn't you know? You take away vital care for sick children.

Taken from the Irish Times, May 13th 2009:

The hospital plans to close several wards and theatres, and have some 8,000 fewer outpatient attendances this year in a bid to stay within budget. It is currently facing a deficit of €9.6 million.

The hospital board has drawn up a break-even plan that includes the closure of a ward of 25 beds with effect from May 2009 and closure of some 20 more beds in July and August.

Our Lady’s also plans to cut out patient appointments by 15 per cent, shut one theatre for July to December 2009, close two theatres for July and August this year and grant unpaid leave to staff who have expressed a voluntary interest for those two months. Temporary/agency staff contracts will also cease.

Here is just womans's story about her son and how much they depend on Crumlin. When there is no bed available for him, and our other sick children, where will they go? Even before any cuts were implemented, the hospital were full to capacity. Surgeries had to be cancelled due to lack of theatre time and ICU beds. Well now there are 25 less ward beds and one less theatre. Children with heart conditions need to be operated on at a certain time, when they reach the right age or weight, when they are well enough. But the Minister ofr Health is telling us that the sickest children will be treated. So basicaly, this means that the window for the most succesful operation time will lapse while children get sicker, and finally get rushed in as emergencies and in all likely hood will not make it, because the operation was left too late. Crumlin is the only pediatric cardiac centre in the Crumlin, children like Cathal and JAck have no other choice.

For the last few weeks, there has been a growing e-mail campaign. Every TD has been hit. I urge you to do the same. Here is the list of TD's, just copy and paste it into your email.

taoiseach@taoiseach.gov.ie, bertie.ahern@oireachtas.ie, michael.ahern@oireachtas.ie, noel.ahern@oireachtas.ie, bernard.allen@oireachtas.ie, chris.andrews@oireachtas.ie, barry.andrews@oireachtas.ie, sean@ardagh.org, bobby.aylward@oireachtas.ie, james.bannon@oireachtas.ie, sean.barrett@oireachtas.ie, joe.behan@oireachtas.ie, john.browne@oireachtas.ie, aine.brady@oireachtas.ie, cyprian.brady@oireachtas.ie, johnny.brady@oireachtas.ie, pat.breen@oireachtas.ie, thomas.p.broughan@oireachtas.ie, niall.blaney@oireachtas.ie, richard.bruton@oireachtas.ie, ulick.burke@oireachtas.ie, joan.burton@oireachtas.ie, catherine.byrne@oireachtas.ie, thomas.byrne@oireachtas.ie, niall.collins@oireachtas.ie, minister.carey@taoiseach.gov.ie, joe.carey@oireachtas.ie, deirdre.clune@oireachtas.ie, dara.calleary@oireachtas.ie, margaret.conlon@oireachtas.ie, paul.connaughton@oireachtas.ie, sean.connick@oireachtas.ie, michael.creed@oireachtas.ie, joe.costello@oireachtas.ie, simon.coveney@oireachtas.ie, minister@finance.gov.ie, seymour.crawford@oireachtas.ie, noel.coonan@oireachtas.ie, john.cregan@oireachtas.ie, lucinda.creighton@oireachtas.ie, jimmy.devins@oireachtas.ie, minister@welfare.ie,
john.curran@oireachtas.ie, michael.darcy@oireachtas.ie, john.deasy@oireachtas.ie, jdeenihan@eircom.net, minister@transport.ie, ciaran.cuffe@oireachtas.ie, timmy.dooley@oireachtas.ie, andrew.doyle@oireachtas.ie, bernard.durkan@oireachtas.ie, damien.english@oireachtas.ie, michael.fitzpatrick@oireachtas.ie, frank.fahey@oireachtas.ie,
frank.feighan@oireachtas.ie, martin.ferris@oireachtas.ie, michael.finneran@oireachtas.ie, olwyn.enright@oireachtas.ie, charles.flanagan@oireachtas.ie, terence.flanagan@oireachtas.ie,
sean.fleming@oireachtas.ie, beverley.flynn@oireachtas.ie, patthecope.gallagher@oireachtas.ie,paul.gogarty@oireachtas.ie, minister@environ.ie, minister@justice.ie, ministersoffice@dast.gov.ie, minister@dfa.ie, noel.grealish@oireachtas.ie, eamon.gilmore@oireachtas.ie, ministers_office@health.irlgov.ie, brendan.howlin@oireachtas.ie, brian.hayes@oireachtas.ie, tom.hayes@oireachtas.ie, Jackie.Healy.Rae@oireachtas.ie, michael.higgins@oireachtas.ie, maire.hoctor@oireachtas.ie, philip.hogan@oireachtas.ie, sean_haughey@education.gov.ie, paul.kehoe@oireachtas.ie, billy.kelleher@eircom.net, peter.kelly@oireachtas.ie, bwk@eircom.net, michael.kennedy@oireachtas.ie, enda.kenny@oireachtas.ie, ministerofstate@dcmnr.gov.ie, minister.kitt@taoiseach.gov.ie,
michael.kitt@oireachtas.ie, seamus.kirk@oireachtas.ie, brian.lenihan@oireachtas.ie, conor.lenihan@oireachtas.ie, michael.lowry@oireachtas.ie, kathleen.lynch@oireachtas.ie,tom.mcellistrim@oireachtas.ie, martin.mansergh@oireachtas.ie, minister_martin@entemp.ie, padraic.mccormack@oireachtas.ie, jim.mcdaid@oireachtas.ie, ciaran.lynch@oireachtas.ie, shane.mcentee@oireachtas.ie, dinny.mcginley@oireachtas.ie, mattie.mcgrath@oireachtas.ie, michael.mcgrath@oireachtas.ie, finian.mcgrath@oireachtas.ie, minister@agriculture.gov.ie, john.moloney@oireachtas.ie, joe.mchugh@oireachtas.ie, liz.mcmanus@oireachtas.ie, olivia.mitchell@oireachtas.ie, john.mcguinness@oireachtas.ie, arthur.morgan@oireachtas.ie, michael.moynihan.td@oireachtas.ie, michael.mulcahy@oireachtas.ie, denis.naughten@oireachtas.ie, sean.ofearghail@oireachtas.ie, mj.nolan@oireachtas.ie, michael.noonan@oireachtas.ie, ocaolain@oireachtas.ie, aire@pobail.ie, minister_okeeffe@education.gov.ie, daniel.neville@oireachtas.ie, aengus.osnodaigh@oireachtas.ie, darragh.obrien@oireachtas.ie, charlie.oconnor@oireachtas.ie, kieran.odonnell@oireachtas.ie, john.odonoghue@oireachtas.ie, fergus.odowd@oireachtas.ie, noel.oflynn@oireachtas.ie, rory.ohanlon@oireachtas.ie, webmaster@defence.irlgov.ie, jim.okeeffe@oireachtas.ie, ned.okeeffe@oireachtas.ie, john.omahony@oireachtas.ie, sean.power@oireachtas.ie, boshea@eircom.net, christy.osullivan@oireachtas.ie, jan.osullivan@oireachtas.ie, willie.penrose@oireachtas, john.perry@oireachtas.ie, mary.orourke@Oireachtas.ie, peter.power@oireachtas.ie, ruairi.quinn@oireachtas.ie, pat.rabbitte@oireachtas.ie, james.reilly@oireachtas.ie, alan.shatter@oireachtas.ie, dick.roche@oireachtas.ie, tanaiste@entemp.ie, minister.ryan@dcmnr.gov.ie, trevor.sargent@oireachtas.ie, eamon.scanlon@oireachtas.ie, michael.ring@oireachtas.ie, pj.sheehan@oireachtas.ie, sean.sherlock@oireachtas.ie, tom.sheahan@oireachtas.ie, roisin.shortall@oireachtas.ie, joanna.tuffy@oireachtas.ie, emmet.stagg@oireachtas.ie, david.stanton@oireachtas.ie, billy.timmins@oireachtas.ie, noel.treacy@oireachtas.ie, mary.upton@oireachtas.ie, michael.woods@oireachtas.ie, jack.wall@oireachtas.ie, mary_wallace@health.irlgov.ie, marya.white@oireachtas.ie, leo.varadkar@oireachtas.ie

Most of them should go through, as of yet, not one member of the governement has contacted me. Maybe you will have more luck.

There is also an on-line petition. Please sign it. Once you sign, it brings you to a donation page, just ignore that, it's got nothing to do with the petition itself, and your signature will be registered even if you close that page. You'll see what I mean.

Campaign Against Cutbacks in Crumlin

P.S. Well done to Aisling and Jack from the TV3 video, Aisling has been a power house behind this campaign, along with another cardiac mammy. She has gotten into most of the papers with her story, and met a senator or two. She set up the petition, and is an amazing woman!!!

PICU 2

We finally got home at about 11pm on Monday night after Cathal's surgery, after seeing him safely and comfortably settled in ICU. I think we might have phoned them to check on him before going to sleep, and again during the night, and the following morning as soon as we got up. The advantage of buying our house where we did, is that we are only 5 minutes away from the hospital. A stroke of luck. We never felt the need to book into parents accommodation, and I am so grateful that we were able to sleep in our own bed. And sleep we did, exhausted from the previous days events.

We got in to see Cathal early the next day, and he was stable. His nurse catered to everything, constantly checking his drugs, taking observations every 30 minutes. She told us that he was doing well, and she was not concerned about him. But during the day, his health started to deteriorate, slowly, so slowly we did not see it.
Paediatric Intensive Care is an intense place. It is a large open room with 6 beds, and two isolation rooms just off the main ward. Each patient has their own nurse. There is always a couple of nurses that run errands. If a nurse has a patient, they are not aloud leave until the end of their shift for infection control. There is a team of registrars, at least two that are constantly doing rounds. Then there is also the aesthetic team, renal, repository and cardiac teams to name but a few. All in all, with all the traffic, it is actually a quiet and peaceful place, even the alarms don't sound urgent. Each one is slightly different, and none of the staff jump when they go off. There is a sense of calm professionalism that surrounds each person which I found very reassuring. They also enforce "Quiet Times" between 7.30am-8.30am, 1pm-3pm and 7.30pm-8.30pm. No parents aloud in PICU during these times. We always took the opportunity to go home, sit for awhile and rest.

On Tuesday the 10th of March (Cathal's first birthday, we got back to ICU at 8.30pm, after the change of shift and hand over. We will never forget his nurse that night. She is the only person we met there who did not radiate that sense of calm. As soon as we reached his bed side after washing our hands and putting on our aprons, she told us she was very worried, he was very sick. There were several doctors close to him, discussing him. Cathal had forgotten to turn his kidneys back on after the surgery, and he was swollen from head to toe with excess fluid. All this extra fluid was then putting pressure on his fragile heart, which in turn was causing hit to work harder, which made it tense up, which in turn would cause his kidneys to shut down. A catch 22. The surgeon was phoned, the cardeologist was called, several options put forward, several drugs administered to get things going. But nothing was working. After several phone consultations with the surgeon, a plan of action was decided upon. But in the mean time, Cathal's nurse kept repeating "I'm very, very worried about him". Maybe she thought she was preparing us, but all it did was give us a sence of foreboding and extreme worry that was not in anyway helpful.

We were kicked out at 10.30pm, not knowing if we would see him alive again.

The renal team were called to put a catheter straight into his bladder. The plan was to kick start his kidneys by pumping fluid into his bladder, and then removing it the same way it went in, which should, in theory start his kidneys working again. His IV fluids were also reduced, every millilitre was counted to make sure that more fluid was coming out than going in.

In the meantime, we sat and waited in the ICU waiting room, exhausted, shattered and petrified. All I could think was that it was not possible for us to loose him, we had committed too much to Cathal, we had put everything into him, all our hopes, love and devotion, and this was not how it could end. This is the second time in his short life that I could feel him slipping away. I didn't call anyone to tell them how serious Cathal's condition was that night, how could I ask people to expect the worst when every time I thought of him leaving us, my mind would totally and completely reject the idea.

Finally, god knows at what time, we were told that it was starting to work. He was expelling more fluid than was going in. Everyone could breath. Once we were reassured by everyone that he was out of danger, we bleary made our way home for some broken sleep.

It was only when his consultant recently told us that he did not know if Cathal was going to pull through or not that night, that we really realised how close he was to dying.








I am sure your all glad that you know there is a happy ending to this story, I certainly am!