Home!

Yes, at last, after 6 long weeks, Cathal went home this evening...!

HOORAY!!!!

What an adventure this has been! His Mammy will soon pick up the threads on her blog, I am sure, and I will be able to resume my “Grand” position.

In the mean time, I want to say a few “thank you’s” to several people – sorry if I sound like some recipient of an Oscar, a Bafta or some other award:

- All of you who read this blog over the last 6 weeks, and came back, and back again.
- All of you who left comments, or emailed me directly – it was hard to keep up-beat and positive all the time, and these helped oh! so much!
- All of you who said prayers, lit candle, did little “get well dances”, sent positive thoughts and good vibes into the ether and around the word, and tried some magicking (crossed fingers, winks and clicking of red shoes included).

It is amazing the level of support felt through this little blog, and very much appreciated.

And then, to family and friends who emailed, texted and phoned… thank you too!

Last but not least, I want to thank my agnostic god (or should I say Goddess? As for a long time this power higher than me has felt like a “Mother”) for helping Cathal through this and out the other side safe and well; and for looking after my own child and the Dad, and giving them the incredible strength they have demonstrated.

Now Cathal, his Mammy and the Dad can take a deep breath, and finally get back to normal life.

Ok, time for some virtual champagne – I think there’s one bottle left, that we didn’t drink it all. Isn’t that right Jazzy? ;-)

Looking Good…?

Last Monday, Cathal started “eating” – meaning that food and nutrients entered his body via his mouth, not the IV tube, for the first time in over 3 weeks. Though we are not sure he appreciates the hospital’s particular delicacies, his mammy’s cuisine is so much nicer! But still...

On Thursday, the pesky NG tube was pulled out, for good – and this time Cathal did not take care of this delicate operation himself, he allowed his nurse to do it!

Yesterday (Friday) he had a quick visit to theatre, for removal under general anaesthetic of the central line. He was very woozy afterwards, and appreciated hugs and cuddles even more than before - I made sure I stepped in, any opportunity and I am there...

So no more tubes sticking into him or out of him. Hooray!

If all goes well over the weekend, he could be going home early next week... even very early next week... I am not saying any more, not to jinx anything.



So I am keeping my fingers crossed all weekend...

and my toes...

and my eyes...

just for good measure...

.

Early Easter Sunday Morning

Tôt le matin, dimanche de Pâques


I have not seen Cathal in such a good form since the surgery as when I arrived early this morning in the hospital. Later on, he even started flirting with his nurse… That is our Cathal! A really pleasure to see him like this.

Je n’ai pas vu Cathal d'aussi bonne forme depuis l’opération que quand je suis arrivée à l’hôpital de bonne heure ce matin. Plus tard, il a même commencé à flirter avec son infirmière… Ca c’est notre Cathal ! Un vrai plaisir de le voir ainsi.

And yes, we do speak a lot of French! And we admire the new bigger room Cathal is now in, away from the nurses station… It’s a good sign, no need for as much close supervision!

Et oui, nous parlons beaucoup en français! Et nous admirons la nouvelle chambre plus grande où Cathal est maintenant, plus loin que l’autre de la station des infirmières… C’est bon signe, plus besoin d’autant de surveillance !

Message for Reid: I told Cathal about you, and he says “Hi, Buddy!” – well, at least I think that’s what he meant by “Ah ta!”

One Month On

Un Mois après

It is a month since Cathal’s little “pump” has been repaired. A very good job has been done, and everyone is happy with it. It’s pumping away nicely, almost as completely as it should do. The little monitor by his bed tells the story, the heart beat count is “normal” and the oxygen saturation levels are top of the range - 100%. We had never seen figures like this during his previous stays!

Cela fait un mois que la petite « pompe » de Cathal a été réparée. Un très bon travail a été fait, et tout le monde en est content. Cela pompe bien, presque complètement comme cela doit le faire. L’appareil de surveillance près de son lit en donne la preuve, le nombre de battements du cœur est « normal » et le niveau de saturation en oxygène est au plus haut - 100%. Nous n’avions jamais vu de chiffres pareils durant ces séjours précédents.

Internal healing issues are still present, poor Cathal is still fed by IV (it has been two and half weeks now!), he still does not like nurses or doctors touching him, even talking to him. But the horrible chest drain has not gone back in, so it is much easier now to pick him up and give him long hugs. But he is in much better form to play.

Les problèmes de cicatrisation internes sont toujours là, pauvre Cathal est toujours nourrit par intraveineuse (cela fait deux semaines et demi que ça dure!), il n’aime toujours pas que les infirmières et les docteurs le touchent, ou même lui parlent. Mais l’horrible drain thoracique n’a pas eu à être réinséré, donc il est pus facile maintenant de le prendre dans les bras et lui faire de gros câlins. Mais il est en meilleure forme pour jouer.

Thank you Ava for the balloon.

So we are bidding our time, patiently - or should I say impatiently???? It is going to be another 10 to 15 days at least before he sees the front door of his house. Patience is a virtue, or so they say!

Donc nous attendons, patiemment – ou devrais-je dire impatiemment ??? Il faut attendre au moins 10 à 15 jours avant qu’il ne voit la porte d’entrée de sa maison. Patience est une vertu, dit-on !

In the mean time, during our quite one-to-one moments, I have kept Cathal updated on all the messages I have received for him, and he tanks everyone for them. He wishes you all a Happy Easter!

En attendant, pendant nos moments seul à seul, j’ai régulièrement transmis à Cathal tous les messages que j’ai reçu pour lui, et il remercie tout le monde. Il vous souhaite tous de Joyeuses Pâques !

A Kinda Miracle

After a weekend of wondering if the healing process had finally taken hold in the one part of Cathal's body that was still resisting, of hoping that the cardio-surgical team would not have to resort to the extreme measure that would be sure of success but bring more pain to this poor tiny boy (see last post), we now know.

It has kinda, and no they did not.

The miracle we hoped for has kinda hapened, the healing seems indeed under way, though not as obvious as it looked for a while. And the cardio-surgical team decided that it was now preferable to let well alone and allow nature to finish what it started. So the last chest drain has come out, he is going to be monitored very closely, tested and examined every day for the next week. If any negative sign, a drain goes back in. If all positive, he will drop the IV feeding and go back to the more normal gastric system of ingesting food we are all familiar with – Hey! Just on time for Easter! Though I imagine Easter Chocolate Eggs won’t be on the menu for a while... Ah sure, the Dad can step in and deal with those...

So Praise Be Given to my Great Agnostic God! I must say it is such a relief, just to know that he is not going to be put through more agony.

And the poor little mite has told me in person that he is fed up with the whole thing. After a trip to the X-ray department yesterday – being wheeled just like a true prince sitting up in his bed from one floor to another, with IV stand, two smiling and chatting nurses and his Nan in tow – Cathal expressed himself very clearly. As pure a temper tantrum as I have seen in quite a while erupted, and anyone looking in got a piece of it... I don’t want to brag, but I think he has inherited That gene from me! And if I was in his position, after these kinds of experience over the last 4 weeks, I would let it rip too!

The other good news is that the Mammy was forced to take a rest this weekend, ordered to sleep in for a change, and let others entertain, consol and watch over Cathal. She looks so much better for it.

In all this, the saving grace is that when the Mammy and the Dad decided to buy their little nest some two years ago, they set their eyes on a cosy little house only a few minutes drive from Our Lady’s Children Hospital, Crumlin, Dublin... Little did they know that this would be a god-send, enabling them to go back to their own bed every night for a full night sleep once Cathal has dropped off - I suspect the morphine and other components in his nightly cocktail help him settle for the night!

So there you have it. Another week of waiting, and observing. But hopeful this is the beginning of the end of this chapter in Cathal’s adventure. It better be...

What Are the Odds?

As I watch helplessly Cathal going through the various stages of his recovery from open heart surgery, I have been wandering what odds he has beaten to be where he is and have what he has.

Statistics are not my forte, but I had to dabble in them at one stage. I don’t remember much, however I think I can still remember how to calculate the odds of a series of events happening. So if any statistician wants to correct any mistake I make along the way, please do so. And I must explain one thing: as the percentages I found vary greatly from one source to another, they are a lot of assumptions here. As the results will show, we come to a stage where the details don’t matter much any more.

Odds of Cathal being born with DS with a mother aged 28: 1/755

Odds of him having a congenital heart defect: 45% - so odds brought to 1/1,678

Odds of defect being Complete Atrio-Ventricular Septal Defect (AVSD): no exact figures, but most common with DS, so let’s say 50% = 1/3,356

Odds of having Pulmonary Stenosis (PS): again no exact figures, but quite common with DS as well, so let’s say 40% = 1/4,195

Odds of having Double Outlet Right Ventricle (DORV): not so common, major assumption here, let’s say 20% = 1/8,390

Add them up together, total so far = 1/15,941

Odds of having all three conditions at the same time? Hummmmm. I am making a call here, from the height of my non-existent knowledge in this field, and I say 10% - we are now reaching the dizzying heights of 1/79,705

So there we have it: 1 chance in close to 80,000.

And now for the little block on the recovery road. As a side issue of the surgery, a little part of his body has not been healing as expected. My little prince has had his fair share of misery in the last couple of weeks, all relating to attempts to stimulate this healing process. On Thursday last, as no lasting improvement had been observed, the cardio-surgical team called it: if no miracle occurs over the weekend, we will proceed with a more drastic action that has a great success rate, but is going to be very painful for Cathal…

Oh no, not again, no more pain, please, no more pain. It is so horrible to see such a young child in pain, despite the morphine and other drugs, to stand by his bed and feel so helpless, to wonder how you could take some of this on you and relieve him…

And he has been pocked, picked, tested, and what have you, so often at this stage, he does not trust the intentions of any of the clinicians: any one crossing the door into his room who is not either of his parents or a familiar face from “the outside” gets a strong telling off. And if this person touches him, cries and screams ensue… Who can blame him! I would do the same.

And guess what? The odds of this type of “hick-up” after open hear surgery is … 5%. So unless my calculator is deceiving me, the overall odds of Cathal being at the stage he is at are 1 chance in over 1.5 million!

Gosh! How lucky is my little prince?

I do not know if it is his luck coming around again. I do not know if it is my telling him that Enough Is Enough, that he has proven he can get a bull’s eye every time, that his Mammy and the Dad are quite exhausted and need a break, and that now we need some proper recovery... I do not know what is doing it, but, it seems, and I am very careful here, I do not want to jinks anything, but indeed it seems there have been definite signs of improvement in the last two days. As if the team’s decision on a plan of action had been enough to prove this might not be necessary after all.

So let’s all cross our fingers…

Having said all this, I have not even spoken about the incredible luck of Cathal being born in this era and this country, where a total repair of all three defects not only can be carried out, but is carried out, even on children with DS. It has not always been the case, and there are places on this planet where it is not the case.

And then he has also the incredible luck of having the parents he has, and the love they pour on him. And that cannot be taken for granted either!

In the mean time, looking at these odds, I am thinking that Cathal is very VERY precious indeed. Of course, I did not need any figures to prove this to me. I have known it since he was born.

I Finally Got Them!

At long long last, after years of trying, going on line well in time, and waiting, waiting, waiting some more (I draw the line at queuing all night in the street, and paying anything else but face value), after years of hoping, wishing, and bemoaning to all and sundry that it was not fair that people get SIX of them for TWO NIGHTS in a row, and I could not even get two, just two, just this once, just for one night…. I finally got them!

What am I talking about?

Need you ask?

Tickets for a U2 concert, of course!

I have never managed to see them live… This will be all reversed next July, on Monday the 27th, in Croke Park, Dublin, where I will be screaming my head off, and rocking my socks off all night.


This might not have anything to do with my journey through Grand-Motherhood. But I just want to put it out there: I AM A GRANDMOTHER WHO ROCKS!

So there…! Now you know.


No April fool here, I did need something to celebrate today: Little Cathal has hit a little block on his road to recovery, and it’s slowing down his progression towards the hospital exit and the way home! But that is for another post.



I got tickets, I got tickets! Hooray!

All I need to do now is Get On My Boots.