Going at Albie speed

So we trotted off to WOMAD music festival to live the life festival-fantastic. Tent? Check. Festival trousers? Check. Wide assortment of cardiac medications and high-calorie food? Check. Bottle of Moet* to celebrate our awesomeness at getting there? Check.  A baby with a oncoming virus too? Check. Lets go.

The festival was great to begin with. Thwarted part-way through though by Albie getting a nasty fever and a hospital admission…. Yuuus! I love hospitals. Which is lucky really, as we are fast collecting the North Island set.

He just had a virus, nothing any other baby can’t handle, but because his oxygen levels are low, they wanted to check he was able to cope with what he had caught okay so they admitted us. The next day as he was dealing with the bug just fine we were allowed on leave. We didn’t go back to the festival, instead we slowed down a couple of gears and went a little early to stay at my sisters house for the week. Which was lovely. Albie slowly went back to his happy, normal self and we said goodbye to his temperature.  It was so great to see Albie playing with his cousins and to hang out with his proud Aunty and Uncle some more.

AND, thanks to Imbali, an aloof Rhodesian Ridgeback and Dingle, a doting Irish Soft Coated Wheaten Terrier, Albie is now saying ” Woof Woof” at anything that even vaguely resembles a dog.

“That is an owl, Albie. Hoot, Hoot.”

“And that is a frog, Albie. Croak, Croak.”

But there is no telling him, “Woof Woof. Woof Woof.” he says.

Albie speed, which perhaps doesn’t encompass music festivals quite yet,  really isn’t so bad.

* The Moet remains unopened. 

And so we go…

Starship called this morning – and Albie will be admitted to the Paediatric Heart Ward on Monday morning. There is still no date for the Rastelli operation though.  The surgeon is a bit concerned that Albie is not as big as they would like for the valve replacement, so there is no plain sailing straight to the operating table just yet. They are starting out with a couple of days of tests and reviews to see where he is at and then they will decide. Its been another tough day.

Medical update

We have known for a while that Albie is on the surgery list for his Rastelli operation to happen sometime between 19 December and 19 February. With his oxygen saturation levels in the 80s, we had imagined that late January/early February was on the cards. But at the same time, we have seen Albie tire recently so we were starting to wonder just how tired our boy would get waiting that long.

Its such a strange place, to be staring down the barrel of an what is an inevitable destination, and yet not knowing when we will arrive. So we hoped Albie’s cardiac review at Wellington Hospital yesterday afternoon would give us a gauge of what we can expect next.  And it did.

Dr Farrell didn’t take long to let us know that Albie’s need for surgery is semi-urgent, and he will be recommending to Starship that he gets prioritised. I knew Albie had been growing slowly. He is a dot no doubt – 6.4 kgs at 9 months( thats 14 pounds for our UK people), but I thought he was doing okay. Well, he was quick to put that idea to rest – saying that he had hoped that his ‘aggressive feeding regime’ would have resulted in much larger weight gains.  He added, that on his current trajectory, developmental delays are quite probable. This was a shock to hear as well.  Brain development is slowed, and different,  in kids with complex congenital heart defects like Albie. It is caused by both the extended time of low oxygen levels prior to surgery and also the time on bypass when he has surgery. Albie needs to start growing now, so that he can develop properly, and he won’t do that growing till after his Rastelli. So he is recommending we get up to Auckland and get it done.

So it was sobering, and scary. Entirely overwhelming. I often think I have a handle on all of this and then I get sprung and I am back in floods of tears wondering why our boy has to be dealing with this all. It will be fine, I know it will. But I want to show Albie how wonderful and beautiful this big world is. And its so, so, so hard knowing that just around the corner is an experience for him that is going to be so far from that, and there is naught I can do about it.  There really is such a thing as heartache – and I’ve got it bad.

Sorry that there is no positive spin to this update. I will get back to a place of gratitude I promise. I am thankful everyday – thankful for Marcus, thankful for Albie, thankful for amazing family and  friends. Thankful we live where we live  - where health care is advanced and also free. I’m thankful for it all.  Just in a funk this morning.

 

Counting the grams

Even though we are home, its still very much a weight-ing game for us all. Albie is putting on weight ever so slowly and is now 3.86 kgs. Weight, or lack of it, is often the bain of the cardiac kid as so much energy is being used on his circulation set-up that not alot is left over for growing.

So settling in at home is punctuated every three hours by a feeding schedule of calorie supplements, tube feeds and expressing. Its had me a wee bit down I have to admit. I think its because somehow I thought that leaving hospital would mean leaving behind all the medical bumpf that has surrounded Wrigglesworth since his arrival. But looking at the syringes, litmus paper and gastric tubes that now occupy our kitchen, I am starting to realise that medical bumpf will be surrounding Albie, wherever we are, for sometime yet.

And then I look at Wrigglesworth – and all is well again. He is delighting in time on his own on the ground, his toy Ruru that hoots, and anyone whispering. He has a strange looking claw hand in the last photo. Thankfully, thats just a trick of photography.

Patience is a virtue…

and I haven’t got it.  This last week has been really hard.  I am tired of people hurting Albie for endless blood tests, and student doctors waking him up as they listen to his heart, and cardiac doctors making decisions without talking with us. Its just a hard environment to be a parent in when so much is out of your control. Now that he is so much closer to being better, I want to whisk Albie away from it all.

Of course we can’t steal him away home just yet. He is yet to gain weight. In fact, the pesky wee mite is losing weight still even though he has a tube back down his nose and they are dosing him up on Calogen. Calogen, is what one nurse described as ‘an anorexics nightmare.’ Essentially its really concentrated calories. Needless to say, I am steering well clear of the stuff! The hope is that once he gets a bit more strength and size he will be able to feed well enough on his own. Fingers and toes firmly crossed for that to happen.

When this will happen, and how long it will take we do not know. What I do know, though is that we continued to be humbled by all the love, support and affection that

One step back

Its been a tough day so I won’t be long. Albie’s shunt is settling in well and his oxygen levels are looking really good which is great.  But, his bowel wall has been starved of oxygen and part of it has died. Poor Albie is in a bit of a miserable state as a result passing lots of blood but they hope it will regenerate with plenty of rest. So he is dosed up again on morphine, nil by mouth still and on five different antibiotics so it doesn’t turn nasty. Poor wee boy. He will be in Intensive Care for quite a while longer yet. We are inspired by Albie who continues to fight it all fiercely though -he has so much chutzpah this one!  Please continue to keep us in your thoughts and prayers

Back to the Mother ship

We are back at Starship. Marcus noticed Mr Wrigglesworth was looking blue last Sunday afternoon, and when we got to the hospital his saturation levels were down around 60%. After a short stay in Wellington hospital, we were flown up to Starship in the early hours of Monday morning.

It seems Wrigglesworth’s pulmonary stenosis is getting more pronounced as his heart grows. On Thursday, they did an operation to enlarge his pulmonary valve to increase blood flow. They did this successfully, which we were quite heartened by to begin with. The stink thing is that the pulmonary artery leading up to the valve is also narrowing. This has meant that the operation hasn’t really had much of an impact on his oxygen levels at all.

So our little Wrigglesworth is going to have to have a much more serious operation early next week to get more oxygenated blood around his wee body. The team here is still deciding whether it will be open heart surgery or whether they can just put a shunt in outside the heart itself. Its upsetting to think of our lil guy having to have another operation so soon. At the same time, we want him to get better so we have to trust that is where we are heading – even if we are heading that way slowly!

After the operation he will be back in Intensive Care. This is what I dread the most as it means that we can visit but not stay with him, he will be  intubated and will be fed via a nasal tube as well. Its perhaps even harder to do this the second time around knowing, just a little, of what normality feels like.

This song is being listened to too much right now. Oh to be home with our wee boy well!