I Heart You?

I know (slap on the wrist), it's been far too long.

I promise to be a better blogger
I promise to be a better blogger...
I promise to be a better blogger...... is that enough? Do I have to write it out 100 times?


Did you know, that there are currently over 100 children in Ireland on a waiting list for cardiac surgery. Did you know that 25 of those children URGENTLY need surgery. So what's the hold up? The surgeons are there, the surgical staff are waiting, even the theatre is open for business.

ICU beds.....they are at a premium in Crumlin hospital. There are only 8 ICU beds for those 100 children.

Eight

Now, the HSE are promising to make FOUR more ICU beds available in 18 months. We all know that those 25 children who need urgent surgeries can't wait 18 months, and I doubt the other 75 can either.
Crumlin is the only hospital where cardiac children can attend. They can't be transferred somewhere else, they can't decided to go to a private hospital for care. We claim that we care for and cherish our children in this country. I don't see any of that care, do you?

Meet Jake, his surgery was cancelled, 2 hours before he was due to be operated on.
"This is Jake he is 14 months old and has Down Syndrome. He also has a minor hole in his heart that he needs to have repaired by open heart surgery. Jake was due to have his surgery on October 5th 2009 in Crumlin Childrens Hospital, Dublin, Ireland. Jake did not have his surgery as there was no ICU bed available for his surgery because of the cut backs and sever shortage of funding. The HSE and the government don't seem to care about Jake or the other 150 children who are awaiting heart surgery at this very minute. These children are ticking time bombs who's hearts could give up at any minute and they will DIE before their time.
I know this because I am Jake's mother and i'm begging you to print off the pioster available on this website and send it to Mary Harney, Minister for Health and beg for the lives or our children. Imagine, in this day and age I am begging for my sons life and that all the other children made to suffer because of our so called leaders who seem to want to line there own pockets before worrying about the country's Health Service. My son needs to have his operation by the time he is 18 months old so he can have the full potential from it. We have 4 months left. We as parents are running out of time and fast. This is happening everyday and we are not alone."
Copied from Jake's website

Meet Joy who is fast running out of time.
"Our daughter Joy is awaiting open heart surgery and is on an indefinite waiting list. Her health is deteriorating daily and we are fighting for her and all the other children in her predicament. Funding needs to be made available for existing ICU departmen and for at least another theatre day. We are asking the governement and each person who cares, to push this situation to be fixed, and fixed it can be."
Copied from Joy's website.

Just two of the twenty five children who need help now.

You can see more of their stories here, here, here and here

The Frontline on RTE1 discussed this issue, which you can see here. Do you believe what the HSE are telling us, I don't... I don't have any faith in them any more.

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!

Down Syndrome Dublin; Speech and Language Survey

Would you be interested in receiving subsidised Speech Therapy for your child with ds in the Dublin region?

Please fill in this form and send it back to the address on the form to help the DS Dublin Branch establish what the demand for this service would be.

Walking Around

I'm taking a little break here to let you all know that I am going to slowly walk the Women's Mini Marathon on Monday the 1st of June. I am collecting money for Down Syndrome Dublin and Heart Children Ireland.

DS Dublin hope to employ a Speech and Language Therapist for it's members. This would mean that S&L would be available to children and teenagers at a subsidised price. A private S&L session costs about 90euro an hour, DS Dublin hope to offer the same thing at half the price.

Heart Children Ireland do brilliant work supporting children and families in hospital. They have provided a play room on one of the cardiac wards, employed supporting staff like a play therapist and paid for vital life saving equipment, to name but a few things.

I am going to split the money between the two charities, straight down the middle. If you can donate anything, please do. Just select the amount you would like to donate and click on the "Give" button on the left. You do not need to be a PayPal account holder, all major cards accepted.

Thank you!!!

Surgery

At 2pm on Monday the 9th of March, Cathal was called to surgery. We were brought down to the surgical reception, the ward nurse carrying his 2 files (he now is on his third) and Cathal’s cardiac liaison nurse following us. Then the hand over, the surgical nurse ran through the check list again with us and the ward nurse.

X-ray- check; Blood tests- check; teddy- check

When every one was satisfied that Cathal did meet all the criteria, and had passed all the tests, we were brought through to theatre. I hope you never have the misfortune to bring a child to surgery in Crumlin, but if it happens, focus on the little signs over the doors, they are fantastic. I know….what an odd thing to notice when you’re going for major heart surgery. There are a few art instillations scattered around the hospital, most people will know the fish tank, which is a submerged Dublin featuring Busaras and Croke Park. The new surgical wing has it’s own instillations. Each door has a sign with something comforting written over it. I can’t remember the exact wording of the signs, but over Recovery it has something along the lines of “In here you wake up all better”. Over one of the anaesthetic rooms: “Were you go for a big sleep”. So among the maze of white corridors there are little snippets to keep your mind off what is about to happen, they keep you some what sane.

We got to the anaesthetic room, and we both gave Cathal a big hug and kiss. He was completely unaware of what was happening….and then the mask went over his mouth, and neither of us will ever forget the look of sheer panic in his eyes. He cried for his Dad, then for his Mammy. He had only started to use Mama and Dada in context, but by God, he was using them in context that day. I will never forget that moment for as long as I live, his eyes were welling up with fear, he didn’t understand, and all we could do was hold on to his hands, helpless. All of a sudden he was asleep, one final hurried kiss and he was whisked off us, the team busy getting to work, against a clock. We were quickly ushered out, the Dad trembling, me sobbing.

K (our liaison nurse) talked to us the whole way out, and explained what the procedure would be from then to surgery. We arranged to meet in a couple of hours. 4pm, and we are waiting for K. She comes over to us, bad news, Cathal is still not in surgery. He is all ready to go, but the little boy before him had some complications, and they are just finishing up. OK….. more waiting.

I am a bit hazy on the events of the day, the times that things happened, all I know is that we met every couple of hours for up dates. In between, we wandered around the hospital, sitting in the lobby, in the canteen, in the coffee shop, outside surgery. Endless waiting.

I can’t even remember what time the surgery ended, or what time the surgeon came to speak to us. All I know is that it was about 10.30 that night that we finally got to see our little boy back in ICU, cold, puffy, but still with us.

The surgery itself was a success. They patched up his Complete AVSD using a type of nylon I believe. They also repaired his Tetralogy of Fallot as best they could, by removing all the excess muscle from the right ventricle and widening the pulmonary artery. They did have to leave in some external pacing wires, he was having some funny heart rhythms before they closed up, mostly because of the right ventricle, but more on that later.

When we got in to see him in ICU, he was on countless drugs, morphine being one, drips, respirator, 3 chest drains, catheter and an external pace maker. In a way, we were lucky that Cathal had already had an operation, only that can prepare you for how your child will look. Of course, this was worse, more of everything…..more intense.

We were told that the next 24-48 hours would be critical, in high sight, surgery was the easiest bit.

Counting Down

Firstly, apologies, I meant to update this last week, but I’ve been finding it tough to get started. We have all been home a week and a half now, and getting back into the swing of things. So, I’ll start at the start, and slowly work my way through the last 8 weeks or so. It will take a few posts, it might get a bit teary, but don’t worry, there is a happy ending.

About 8 weeks ago, the cardiac secretary phoned me to tell me that Cathal was scheduled for surgery the following week, March the 9th.

Shock

I only heard half of what I was told. “Come in on Thursday for echo, ecg and x-ray, and then come in Sunday to be admitted”……OK…..

I rang the Dad immediately, in floods of tears and chocking voice I told him the news.

Thursday came, Cathal and I went up to the hospital to get all the tests and checks done. I completely underestimated what it takes to be admitted for surgery. There were blood tests, x-ray, echo, ecg, MRSA swabs, urine sample, stool sample (luckily he gave those to the nurse on the day, and we didn’t have to store any in our fridge), consent to be signed, checklists to go through, cardiac liaison nurse to speak to. We spent the entire day in Crumlin, from about 10 in the morning, to 6.30 that night. I came home with a starving, exhausted child, a splitting headache and an unusable bathroom. Oh yes, you see the same week we got the news, our one and only bathroom was being ripped out and replaced…..good timing!!! Luckily, the guys doing our bathroom were amazing, and stayed till 11 on Friday night to finish the bathroom, so that they would not need to come back the following Monday, surgery day.

The weekend was spent franticly cleaning the house, getting in supplies of soup, dinners, biscuits and sweets. And also, having a small birthday celebration for the man in question.

Sunday….the day we go in to hospital. We were given a great tip off, don’t get admitted until about 4.30. Admissions close at 5, so get in just before they close. I stayed the night in the room with Cathal, on the floor on a mattress that can only be described as rock like. A tip for all those sleeping on those mattresses in Crumlin, make sure to get a light coloured one, they are softer, newer and you aren’t actually lying directly on the floor. Avoid all dark blue and green ones, these are instruments of torture. Cathal thought it was hilarious that I was on the floor, at 4 in the morning, he was lying on his tummy looking down at me grinning. Cathal was supposed to be first into surgery the following morning, so had to fast from 6am. But, things got switched around, and he ended up second on the list. He had to keep fasting through it all. He kept his spirits up, he was flirting with the nurses, sleeping, doing well. By about lunch time though, he had had enough and just ignored everyone, licking his lips with thirst, looking down at his sheets forlornly.

Finally, at 2pm, on Monday the 9th, he was called for surgery

Monday is the Day

On Monday, I got the call I've been dreading, the one I've been hopefully anticipating.

Cathal has his date for surgery.

He is scheduled for his full heart repair on Monday the 9th of March, the day before his first birthday.

Any one fancy a party in ICU?

An AGM Update

Last Monday night, the Dad and I trundled into town to attend the DS Dublin AGM. The flyer that came in the post a few weeks before mentioned speech and language, and we were hooked. Who does not want to hear about a way to provide your child with speech and language. We parked on Exchequer street, almost infront of the meeting location, very handy. It felt like it's been years since I've been out in town at night. This is as close to a night on the town it gets for us at the moment.
When we got to the meeting, with plenty of time to spare, we sat down with Noah's parents for a little chat before hand. Things kicked off after 8, the usual AGM stuff....
Then, the S&L proposal. DS Dublin have been putting in a lot of research into hiring a S&L therapist. Some of the other local branches have been able to get this up and running, Kerry, Limerick, Galway, to name but a few. All have done it their own way, but it has been done. The proposal is to follow the Kerry model, and it seems that they have been very helpful in giving advice.
Kerry have managed to hire a senior S&L therapist through additional membership and increased fundraising. Their therapist travels to three locations in Kerry once a week, and the famillies in that area then go to her/him. The courses run in 8 week blocks, with a 6 week break between. You atend a one on one session every two weeks. It cost €40 per session (as oposed to about €90 privatly). The fact that Kerry have been able to offer this has attracted more families to join their branch, thus brining in more money in membership and fundraising. This extra money pays for the therapisit's travel costs and it also pays for the three locations which are needed. DSI head office look after the payrole for the therapist. A senior therapist was hired at first to set everything up and put the systm in motion. Once this is done, a gradute can be hired at a much reduced cost to assist the senior therapist.
To me, this sounds fantastic. It can only be beneficial to all of us. However, aparently the membership of the Dublin branch only stands at 300. To me, for the size of this city, it sounds tiny. Where is everyone? Maybe because we are new to all this, we've been very enthusiastic about joing the branch. I mean, the talks that are organised, I think, are well worth the €20 joining fee. As far as I know, in the next few weeks, a questionaire will be sent out to all members asking if they feel that this would be a service they would like to avail of. There will be a sub-commitee set up to orgainse the logistics of the whole thing, and members will be asked to volunteer. I've voluenteered to help, even though we are lucky to have access to a S&L therapist now through our services provider, who knows what might happen in the future. It's better to have a back up of some kind. It seems that there is a lot of work involved in the set up, but once it is up and running, it runs itself.

And this leads me nicely to fundraising for this worthy cause. Last year, DS Dublin got 100 women to run/ jog/ walk the Women's Mini Marathon. They asked for 20 members to bring along 5 friends to make up the number. This year they are looking for 250!!!! So do it now, registeration is open....I'm signing up, hopefully, I'll get to do it, as long as the little fella isn't in the hospital with his heart..... So I'll be houding you all for a couple of euro a few weeks before the race. Would you like to sign up?

Can I do the Marathon on this?

And on a little personal note, a friend of mine is flying the coup, and moving to the sunny beaches of the Caymen Islands. Nice work if you can get it!!! Unfortunatly, due to a very important french relative (my god mother) flying in yesterday, we could not make it to her leaving party last night. So Lisa, have a great time, I am so jealous that you get to live under the sun for a few years...... We will all be over to invade your place for a holiday, I promise.....

Another Ticker Update

Last week Cathal went to see his cardiologist, and it looks like he should be all fixed up by June (fingers, toes, arms, legs crossed). We'll see, I am still not going to hold my breath just yet, and we'll be taking it with a pinch of salt when that date comes in. In the meantime, his dodgy pulmonary artery has grown again, from 5mm to 7mm.

More posts and updates to come.......soon.......I promise

Happy Valentine's Day

Now, I'm not the most romantic person around, actually, I'm a bit of a bah humbug when it comes to Valentine's Day (after all, you should make the effort every day), but now I have no excuse. So forget those overpriced roses and the dodgy marzipan chocolates, get out there and find a Windmill for a measly €2 on the 13th and 14th in aid of Heart Children Ireland.

My Little Boy

Yes, that's it, the little baby is gone, only to be replaced with a little boy. I started to notice this change last week with a trip to the hairdressers. While I was there I decided to ask the hairdressers advice on the best way to tackle my son's mullet. I know what you are thinking, surely we did not leave him almost 11 months in 1985, but he was born with a rat's tail, and it was starting to get a bit too long for comfort. She offered to trim it for me there and then, so now my little baby looks like a little boy. Don't worry, the front wasn't touched, it's still as long and silky as ever. But it has changed him, he's grown up some how. When the other staff realised he was getting sheared, they came bounding towards me....
"Is he getting his first hair cut?"
Yes
"Are you going to keep his hair?"
Emmmm.....am I? Is that what's done now, gosh, I don't want to look like a bad Mammy.....Of course I'm going to keep it.
So now I have a little plastic bag, somewhere in the bookcase (well I think that's where I left it) with a little bit of baby hair in it.

Recently we've come to realise that between the growth spurts, the teething, the crankiness and tiredness, there is a little personality, a real little person emerging. I have come to the conclusion that he's a bit mad, possibly a little hyper active and a little comedian. He's trying to be more active, still no crawling, but he is rolling, in one direction , down the centre of the sitting room. He hits everything and shakes it to see what it does. Wooden spoons are used as drumsticks, tiny stuffed cloth animals are used as teething rings. He is exploring everything and anything you give him (except food.....typical). I scour the house for something new to give him. At the moment his favourite things are the plastic insert of a biscuit packet, a string of beads, and a rubber spatula.

He is also discovering his voice, raspberries are the way forward in communication it seems. I can't leave a room without waving good bye to him or he starts shouting after me. Whining and pretend crying are being used as blackmail.

He's got a thing for the ladies too, he flirts while we do the weekly shop, beams at any woman who talks to him.
"Hello, will you be my new Mammy?"

Sleeping 12 hours at night time, and taking long afternoon naps is now a thing of the past, apparently sleeping is for girls!

I can barley remember the days when he was tiny, sleepy and placid. Now all he wants to do is bounce and wriggle in my arms, while simultaneously hanging out of my hair, pretending to be Tarzan (my head is not a jungle!).
How fast time passes. What new trait will tomorrow bring?




Health up date: Just like Noah, Cathal had his eye test recently, and he has been given the all clear. He can see!!! No "wobble" in his eyes, no cataracts, just a strong possibility that he is a little long sited, but nothing that needs a prescription just yet. Next eye test is this time next year. Keep yer eyes peeled.....

Wanna be in My Band?

A & E is So Much Fun

Ah yes, he is keeping us on our toes, this little one. It all started last night, while Cathal was asleep. We noticed that he was short of breath and a little wheezy. So this morning, when he was still no better and he had an annoying cough that sounded more like a bark, we decided to visit our local A & E in Crumlin. And a good thing too. Turns out when we got there that his oxygen saturation levels were low, even for him.....between 58 and 60 (normally he is between 75 & 80). His chest was listened to in great detail, the doctor looked down his throat and discovered that his throat and airways are a bit inflamed. So yet another virus strikes again. When will they end?

A few doses of inhalers were administered, a steroid and after a few hours, he was jumping around the place. Ahhh......it's good to be able to breath again. His sats jumped up to 79/80 so we were let go....wohoo!!!

We've been given an inhaler to give to him as he needs, but he hates it. It's a two person job. How I'm going to give it while The Dad is at work, I don't know. Any takers??

They All Said It was Just Man Flu

I was sick!

You may have heard, I was sick over Christmas. I had a rotten time, big swollen runny eyes, nose that was so stuffed up and runny I couldn't even breath, a horrible cough and a sore throat. To top it all off, those parents of mine opened most of MY presents while I tried to get a bit of kip on the big day itself. Bahumbug to them anyway. But don't worry, I got my own back, I managed to rub my nose in my mammy's face lots of times while pretending to give her those cute sloppy kisses. Ha, she fell for it, the fool, and I managed to spread....I mean share my germs. Sharing is Caring!!! She's still a bit sick, but well enough to look after me.
And I was teething and have nothing to show for it. Poo to Christmas. It's a bloody pain.

But I have managed to eat my way through most of my presents now. They all taste delicious by the way, hmmmm.....wooden toy trains are tasty. Those pesky parents keep trying to give me bits of orange and "healthy" biscuits to chew on, but toys are so much nicer.

Don't forget, my Nanny has organized a grand-parents day on the 14th....check on the left for more details and such. I'm off to have a bath now, I love my bath!