Cardiac Update

Many of you will remember, we left Starship Hospital on New Years Eve with the express goal of getting some more weight on him. John Artrip, his surgeon, wasn’t keen to do the Rastelli operation on him at the size that he was. I remember him saying that they wanted to get Albie either over 8kgs or over a year old before having to do the Rastelli. I also remember at the time that both of those goals seemed bonkerscrazyfaraway to me.

Well, we’ve arrived – at both of those places. Albie is now proudly sitting at 8.16kgs at 14 months. Its a pretty momentous place to get to. Its great to know that the operation is now a lot less risky than it was at the end of last year. Its a victory for Albie!

He has started to catch up a little bit in the weight stakes too. In December he was 1.2 kgs below the 3rd percentile which was the cause of everyones concern, then in February he was 900g below it, and now he is just 400g below it. Obviously reaching the 3rd percentile is a strange aim for most, but for this tiny-but-cute man, it’d be pretty cool to get on an actual trend line and out of his “Albie-centile” so we are quietly gunning for that to happen next.

So, the question on many peoples lips – when will he be having his operation?

Sunny side up

We have been off up to Auckland again. This time there was more hanging about with friends, opshopping and eating sushi than previous visits which was a-okay with me. And, thanks to Kobayashi, who endowed me with the most generous of gifts – we even attended Hall and Oates live at the Villa Maria Winery.   I am a die-hard fan of these guys with You  Make My Dreams Come True and I Can’t Go For That two of my absolute favourite tracks of all time. Yes I am that cheesy.

It was like, totally awesome. We arrived in time for the opening acts, Albie ate a great big dinner and then  had a huge feed and slept on me in the sling for a couple of hours while I swayed from side to side to the tunes. Then, just in time for all their marvellous hits, Albie woke up and thought life was very exciting indeed – disco lights, people, dancing, muffled music – Wow! This is cool Mum!

And so I danced about on the grass with a very starry-eyed baby in blue earmuffs for their encores.  I must say when I was boogie-ing about to You  Make My Dreams Come True with Albie and Marcus, Jason, Megan, Hels and companies under the warm summer night sky it really did ring true. What a lucky lady I am!

So yeah, Hall and Oates are still brilliant after all these years, even with the moustache gone.

Shed a tear for that one – I LOVED that moustache. Megan, you are a diamond. What a present indeed.

In other news, Albie is continuing to do a whole lot better than he was before Christmas. Gone are the sweats, and the overtired boy needing loads of naps. Instead Albie is all bright-eyed and perky and putting on weight again. He is reflecting the massive change in his oxygen saturation levels – which have seriously increased. His latest reading was 92%. It hasn’t been that high for a really long time and its lovely to having our energetic boy back. Hopefully get some more answers as to why this has happened at the next Starship Clinic. In the meantime you won’t see me complaining!

Food, glorious food

stunning sight on the scales last week – finally over 7kgs. He has the most delightfully decadent diet – avocado, coconut cream, nuts, nuts, nuts, pastry, olive oil, mayonnaise – ridiculously delicious things full of fat and calories are spread upon everything. Its a daily obsession getting food into him and I seem to be amassing a mighty fine collection of photos of him eating it all.

He is an independent, focused wee man and MUST feed himself. His lips seal tight shut if I try to get a spoon in there, so three times a day he makes an unholy mess and I appreciate our wooden floors. That last photo there is Albie all over. He was eating pasta and fresh veges slathered in free-range mayonnaise. Well, actually he was eating just the mayonnaise, gingerly extracting each pasta piece or vegetable from his dish, sucking it dry of mayo and then popping it out carefully on his tray before going in for another. I marvel at this little man emerging.

We’re all going on a summer holiday.

After another discussion about Albie, they have decided not to operate and to send us away. The Rastelli repair is much more riskier the size that he is currently, and as his oxygen levels are still in the 80s, there is time to wait and get some more grams on him.

We are booked in for late January for a review then and they will decide again then what to do.  I am sure it won’t be the palaver it has been this time around!

We are going on a much needed summer holiday and to be honest, it feels like a bit of a reprieve. We’ve booked a car and are going to hit the road – New Years with friends in the Coromandel and a wedding up north of some lovely friends that we didn’t think we would make. Talk about tremendous!

Thanks again for the love people, you’re awesome.

Rollercoaster Park!

This story has as many twists and turns as a cheesy blockbuster. When we were sent away to Ronald McDonald House for Christmas, we had been told by his cardiologist that we would be coming back for surgery on Wednesday 28th. They had investigated his diet, looked at his calorie intake, and decided there was no other way to get him to put on weight so it was time to get the surgery done.

To get a call to come back into hospital on Monday 26th to investigate his diet, and how to put weight on him again, was confusing to say the least. It was what we had done the week before. It did  seem odd, but the surgeon was adamant that we needed to check, so we agreed. We tried to tell him that it was what we had done with the dietitian already, but he didn’t seem to believe us.

Anyway, it all unravelled yesterday. Our cardiologist went away on annual leave, and the notes on the work they did with the dietitian the previous week weren’t handed over properly. The surgeon picked up our medical notes and didn’t get any of the information about the investigations that had already been made into his diet – and so rightly, got us in to start it all again.

Once those that knew what had happened prior to Christmas arrived back and saw us again doing the feed and calorie charts  that we had done the week before, it all got sorted out. The cardiologist on the ward at the moment called it a ‘monumental messup’ and apologised profusely for mucking us around so much.

But it does remain that the surgeon would like him bigger and has said he would like to wait. So, they are meeting again to decided one way or the other. It will be surgery, or we will be going home to put more weight on at Albie pace (ie. very, very slowly).

Its hard not to be a little upset at all of this, but no harm has been done and its all been in the interest of Albie, so its okay. And mistakes do happen, and its a bad time of year for staff changes, so we understand, its just a bit dumb we got caught up in it all.

So now we are waiting nervously. Marcus said its like Surgical X Factor – we are either in or going home. And the drumroll is taking FOREVER.

Will update you when we find out.

Hold the phones…..

So,  surgery is on hold. We got readmitted yesterday after the surgical team had another close look at Albie’s heart. They are concerned that the operation is more risky at the size that he is. His right ventricle is a little too small for everything they need to do in there and they really do want him bigger.

We will be here for two weeks to fatten him up and then he will be reviewed again. We are drained. Of course, we only want what is best for Albie and to make the Rastelli operation as safe as possible, so the change in plan is fine in that respect. Hard to deal with the ever-changing feast this brings though, particularly when we were so very close to getting it behind us.

Thanks to you all the support we have received for what was planned tomorrow. You can hold on to it for now – we will be needing it again in the future!

 

The heart of the matter

After a bundle of scans and tests, its been decided. Wednesday 28 December is to be the date for Albie’s Rastelli operation.

The surgeons would have liked Albie to be bigger than he is. The operation is a bit more dangerous and a bit more complicated the size that he is, but he isn’t growing at all well without the operation, despite all the extra calories he gets, so its time to get it behind us. Its cool timing that our boy will be getting a new heart for a new year.  We are so excited to see Albie grow and have his va-va-voom back.  So just focusing on that rather than all the nasty stuff.

Until Tuesday next week, we’ve been allowed off the ward to stay at Ronald Macdonald House together as a family for Christmas.

Just in time too, as there was a Ronald Macdonald Christmas Party here this afternoon. I love this photo – Albie looks as perturbed by the whole thing as I was. And I loooove Marcus’ nervous smile as The Golden Arches encroaches on his vegetarian space too. Its too funny.

 

ere’s our boy playing in the garden. I can see he is getting more and more tired in these photos, poor lil mite. He is quieter now for sure, less giggles, but he is trucking along. We have an appointment next Thursday here at Wellington hospital to check him out. That’ll give us an indication of whether we will be going up to Starship before the Christmas break or after. I can’t wait to get our full spirited Albie back, it’ll be tremendous.

Sorry I have been  a little slacker recently keeping y’all in the loop. I have been a bit distracted by organising The Big Shwop again. It is great actually to have some other things to focus on.

Treasure Island

lbie was a bit cute this morning as I showed him his new basket of “treasures” that I put together for him. “Treasures” as in things from about the house that this guy finds mystifyingly alluring: latest bundle including such delights as an egg cup, a tea strainer, and a paua shell. Fisher Price have got nothing on me.

Mum, have you SEEN what is in this basket? It is UNREAL!

Trees in the wind

 was hanging out the washing while Albie was enraptured by the wind rustling in the trees. I grabbed the camera while he enjoyed the show. I love how he helps me see this world anew. Such wonder!

 

And like trees in the wind, we too have had to be flexible. We had thought his Rastelli operation wouldn’t be till the middle of 2012, but on Friday we received a letter from Starship Hospital. Albie has been put on the surgery list for his Rastelli operation, and it will happen between 19 December 2011 and 19 February 2012, actual date yet to be confirmed.  Its a lot sooner than we thought and I can feel giant butterflies in my stomach beginning just writing about it to you…. and then I look at our boy again. Its going to be fine.