life at home

It was two weeks ago that Oscar was discharged from Ward 23B and life on the outside has been going well! Oscar's recovery has been straight forward and it's hard to imagine he had open heart surgery only 3 weeks ago. He is happy in himself and gaining loads of weight (250g this week) which is keeping us busy and up alot at night. I had coffee group yesterday with my ante-natal class and it seems all our babies are going through a feeding frenzy again and we all feel like we have new borns in the house again - so good to know Oscar is just doing normal baby stuff. It's still amusing to us when he cries for food and gets very grupmy if we take too long to get the bottle in his mouth as he had never displayed that frantic need for food that a healthy baby does, before the operation. Now he is a healthy baby and - subject to verification from the cardiologist in a couple of weeks when we go for our big follow-up clinic appointment - he no longer has a heart condition!!!

We meet with the cleft team next month to find out what their plans are for his next round of surgery and until then we have no idea if his lip repair will be done this side of Christmas or early next year. At least we are well versed in preparing for an operation and it certainly doesn't feel as daunting as it once did.

Oscar moved into his own room last Friday and into his new cot. It's another exciting milestone and he seems to be coping well (as are his parents, especially after he slept for about six hours last night!).

It's hard to explain what it was like being at Starship but we reflect everyday on what an amazing and special time it was (albeit one we'd rather not have had to go through in the first place). We met some amazing and special people and really got to appreciate how lucky we are to live in a country with a great public health system (ok we know it's not perfect) and to see what an amazing place Auckland Hospital is. Brennan and I both wanted jobs there by the end of it - there is always so much going on and there seems to be no end of opportunities there; good people who really seem committed to their work and to be doing something they love. Not to mention what a nice place the new hospital is. We also really appreciated that special time with Oscar - in our bubble where there wasn't an outside world of shopping, cleaning, cooking etc... just us and the ever opening door of nurses, doctors and visitors. Mainly we feel lucky to have shared the experience with the other families on the ward.

Better run, little boy just waking from his sleep and if I don't send this now another day will go by.
Happy weekend to all.
xxx
fi

pre and post op photos

Oscar saying goodbye to Monkey

Oscar in his cot on the way to theatre

Post Op, back in Ward 23. Top to bottom: oxygen supply taped across face (which wasn't required much after about four hours post-op),
the two white dots on wires on his chest are monitoring heart rate (there were also an O2 saturation monitor and respiratory rate monitor),
obviously, the scar!,
beleive it or not the two plastic things in the square plastic bag in the middle are connected to wires which are connected to his heart directly - they are pacing wires in case his heart became irregular or had faltered after closing the chest (electricity, ay!?) - the pacing wires are attached inside the chest cavity during surgery to the outside of the heart with 'very loose stitches' (I know, huh!?), so that they can be removed without having to 'go back in',
Older Kids who have this done - the pacing wires removed while they are awake and conscious but probably on morphine - say it is a weird feeling - no kidding ay?,
he also has lots of pink stains on his skin from the pre-op antiseptic wash,
and under the big plasters just above the sheet are the real gross ones - don't read on if you are squeamish! - they are flexible plastic drain tubes which are placed in his chest cavity during surgery so that any fluid which gathers post-op comes out instead of sitting round and making trouble,
Yes, the flexible plastic drains and the pacing wires are removed viscerally and literally with a bit of a yank - by a nurse! - after the stitches holding them in place on his skin are removed...

And yes, looking a bit groggy!

Reunited with Monkey and sleeping soundly!

Chilling out in the HDU cot

Super Starfush Man returns, albeit with one hand weighted down - its just protection for the i/v line they put in so they could remove all the operation day anaesthetic ones which were in horrible places (important step in recovery), but still give him morphine if required.

Back in his hammock on post op day 2,3 or 4 - tubes and all - cause he wouldn't go to sleep in HDU

we're home....

Oscar got discharged from hospital this morning! He is now sleeping soundly in his hammock and Brennan, Sal (sister) and I are on a house cleaning mission.
Needless to say we are very happy to be here... will write later cos I just look like I'm mucking around and I'm supposed to be working!

Fi

looking good

Oscar got a good report from the doctor this morning and we are just waiting for some patients to be sent home today so that we can move out of HDU back into a side room!
Our nurse removed Oscar's oxygen supply today and also the lure in his arm, so we now just have the feeding tube and some electrodes on him.... a lot less paraphernalia than before. He hasn't had any morphine since 9 last night and is still uncomfortable when peeing, but it seems to be on the improve. They think it is just some trauma from having the catheter removed. 
Today it seems that we almost have our boy back. We've had smiles and giggles and lots of waving of the superstarfish arms. All in all the smiles have returned to our faces and I think we can imagine going home soon.


We are having trouble uploading photos at the moment, but will get some up asap.

Monday Monday

So we're back into the bustle of the working week and more staff on the ward than on the weekends - Monday mornings are busy! Oscar had a good night and behaved well for his nurse. We too had a good nights sleep and feel a little more human today.
We are still in HDU as Oscar is still on quite a bit of morphine due to pain when peeing so bit of a hold up but hopefully they'll get to the bottom of that problem today... no further mention of it being a hernia so that's good. Otherwise he appears more relaxed and happier than he has. No problems heart wise so we no complain!


Oscar woke up this morning just before his eight o'clock feed. Though not his classic 'smiley and chatty' self, he seemed very much himself - very calm and happy to just look around at things and not the kind of clouded over Oscar we have been a bit worried about all weekend. He still obviously has a sore and cloggy throat from the surgery breathing tube (which was taken out shortly after the operation) and the feeding tube, so the chatting tends to come out as gurgling anyway. But he had a really good scream after breakfast, and in typical fashion all the medical faces poked their heads in and said it was good for him!... which is good, because there wasn't anything we could to stop him. Eventually he slipped back into a morphine stare and then sleep... but much less morphine now of course, and much more peaceful recuperative sleep. 


Some more wires coming out of/off our son before next feed at 11am so we better get back.
Happy Monday folks.
xx

update

Oscar is still in HDU and for the most part is doing well. Heart wise all is going well however he is still needing quite a bit of morphine as he is a lot of pain when going for a pee. We are not sure why and are growing a little impatient to find out - they are running some tests and it could possibly be a hernia, but that's only speculation at this stage.
Anyway I am just away from him to take a shower and get ready for family visits so that's it for now, but will write later in the day.

Back in Ward 23B

Hi! Oscar is out of PICU and back in Ward 23B (Heart Ward) in the High Dependency Unit - HDU, which is a room on the ward with a few more nurses and machines per square foot. (Next step in a few days will be back into a "side room" - ie our own room like we were in before).


He freaked us out a bit yesterday in PICU. He was more awakeish and restless than we had expected and the staff just weren't our good mates on 23B, so we were glad when he was transferred this morning - after only about 18 hours in PICU (we had expected 48 or so). He had been extubated (breathing tube removed) last night as he started pretty much breathing for himself quite soon after arriving in PICU - but he is still on a bit of oxygen just to help him out. So before leaving PICU he just needed some drains removed and little stuff and he was ready to go...


Needless to say 23B welcomed us back with champagne and chocolates, with seven of the top surgeons on hand to congratulate Oscar in person - they are so good to us - before settling us into a dark corner of HDU where he is currently sleeping soundly. OK well there are some lies and hopefulnesses here but you get the picture.


Brennan.


I'd just like to add that we wouldn't have been writing with such good humour this morning.... just so you don't think we've breezed through this without skipping a beat - here is the truth... 
It's been a terribly hard couple of days and I have had to leave the room a number of times to catch my breath and to let the nurses do some of the nasty things. It goes against every instinct to just standby and watch your defenseless baby go through all of that and I truly hope yesterday will remain the toughest day of Oscar's life (fullstop). 


It was like a weight had lifted as soon as we got back to the ward today, he calmed down almost immediately and I certainly did. The hardest thing for me was that he didn't close his eyes at all in PICU even though he was definitely out of it most of the time and he just looked really scared and unhappy, now he has eyes closed and is enjoying having his hand held. We even had a small first smile for Dolly one of the nurses (who is a baby whisperer) when she came to visit him tonight!!!!! Lets hope there are many more of them in the coming days. 
We continue to gather much strength from the other amazing parents, children and babies who are on this journey with us and can't imagine doing it without them all. We will be a bit lost when we go home (but not for long).
Thanks for the visits, calls, texts, emails and food (you did a great job Matt and the card wasn't even inappropriate for a change).


Fiona




    

All patched up - we finally had our day today.

Oscar Noah Rigby's surgeon is very pleased with the way his surgery went this morning! He said there were four major things the surgeons worry about with this surgery and I can't remember any of them - but I do remember that they were all ticked off as done and dusted!! importantly, his heat rhythm, which can be disrupted by the surgery, has re-established well, and according to post surgery checks the patch is doing a great job and there is no residual leaking around the edge.


So, we had to have him nil by mouth since early this morning, wheel him down awake and grinning and hand him over - we were pleased to have had some experience in all of those things... 


Once the surgery was underway we made our way into the city to pass some time, until we got the call from the nurse that he was off bypass. Then a bit later, from the surgeon reporting, and then an invite from the PICU nurse to come and see him... He is still cute, thank goodness!... his scar is smaller than I expected, there are lots of lines in and out of him, but he has already started stirring and moving, to our surprise. 


So by all reports he is doing great, and we are waiting to check into our new accommodation in the Family Rooms, so we can have a sleep and a little recuperate.


love and thanks for 'keeping' in touch with us through this, even if it has been through this rather odd medium - we have felt you all checking in to read up on our status!

it's true folks, you can be cancelled 4 times...

If you've seen the news, you'll know there was a car crash in Kawerau yesterday... those 3 kids are now in Starship Intensive Care, so we have been cancelled again. 
We're calming down now, but we had our angry pants on for the past couple of hours. Angry that 3 kids were in a car without their seat belts on. Angry that they didn't tell us till 8.30 this morning and made us starve Oscar from 2am when they must have known hours ago that the 
PICU beds were full... No, it is not the surgeon or the cardiologist or anesthetist that we depend on to get into surgery - the biggest hurdle which has stopped us three out of four times is the availability of a PICU bed and PICU nurse - A PICU nurse is dedicated to only one child in the hours and days after surgery... Angry that I almost gave myself a migraine this morning with the stress.
Oscar has been fed now but we're going nil by mouth again from 9am as there is a slim, slim, super slim chance that they will do him this afternoon... otherwise they try again tomorrow....
so since this is a family show I wont put down all the swear words I'd like to and I'll go get some fresh air instead.

please let it be tomorrow

good evening,
All systems are go for the morning, Oscar should be called for around 7.30am. Meet with his new surgeon this afternoon, his name is John and he's from NYC, studied at Columbia University and now calls Auckland home. He was a great pains to tell us that it is a real honour to work here as part of the Greenlane Hospital Cardiology Services (which is now based at Auckland Hospital, but much of the pionnering heart transplant work etc happened out of Greenlane). It has the highest international reputation and is one of THE places a cardiac surgeon wants to work in the world. Aren't we lucky!

I'm just dog tired tonight and was really over it all today, but I've come home tonight and left Brennan and Oscar in our other home at Ward 23B. It's nice to be here with a glass of wine knowing that no one is going to burst through the door to my room all night long.

We are well practised at this getting ready for surgery gig now, but to be honest I'm not feeling too flash about it tonight... a good nights sleep should sort me out though and we look forward to letting you know that it's all taken place some time tomorrow afternoon.

Fiona

ps Oscar now weighs 5.12kg, he put on 70g yesterday and 50g today... he's starting to look cubby and it's delightful.
xx

could be Wednesday.. 4th time lucky???

We have been updated and Oscar is down on the surgical list for Wednesday this week - as we all know it's not a definite, but that's what they're working towards at this point. 
Our friends from the ward sent their 2 week old downstairs for his op this afternoon, they are currently sitting up here at Muffin Break in the hospital waiting for the surgeon to call to say they've finished... we know he's off the by-pass machine and hopefully will be in ICU shortly so they can go be with him. They are holding up well and we hope to be sitting with them in ICU on Wednesday evening!


In the meantime I am grateful for having all of this precious time with Oscar where I don't have to get him in the car and dash off to one appointment or another.


Fingers crossed for Wednesday folks.

no poblem!...

So I might have been a bit drunk last time I (Cat-Daddy) posted... which might have been the long one with the cat photos...

But today I am not - I am at TVNZ 'working'.

No surgery yesterday as many of you will have heard by now. The only thing that could have got in the way was an emergency, and it did... an adult heart which had been tranpsplanted into a new adult body did not respod and the surgeons had to keep the adult heart's new body on bypass... until they could get the adult heart to start doing its thing in its new environs.

Bypass is when the heart is stopped and the surgical team are using multiple devices to extract blood from the body, thin it, oxegenate it, warm it, thicken it again and return it to the body. When Osacr is in surgery we will get an 'off bypass' phone call letting us know when Oscar's heart is all go again after being on bypass, and the more complex matters in the surgery have been completed.

Anyway, no surgery yet and still waiting for the doctor's regular rounds this morning... and still waiting to find out when our next chance for surgery is - we can now call them 'chances' rather than 'bookings', I think!

Standing Oh So By.

... as we say to Oscar when he is a lil grizzly, 'no poblem'.

not today... maybe Sunday

Surgery has been cancelled again today - the morning booking was taking alot longer than expected so our surgeon couldn't get into the theatre. They told us about 2pm that we wouldn't be going in, so quickly got the bottle into Oscar's mouth as he had been nil by mouth since 9am. Brennan walked alot of km's around the hospital between midday and 2 trying to keep him asleep.
The surgeon came to see us to say that she is trying to get a team together for Sunday as she is off for the school holidays next week and Oscar is her baby and she'd prefer not to hand him over to the other surgeon... again it's mainly dependant on having staff and space in PICU but she said 95% it'll happen Sunday!
We are currently in an awful cafe on K'rd to get internet access and hopefully the next stop is a glass of wine at Verona and then back to the hospital to give the boy a feed.
I know all of you who love Oscar are finding this wait tough as well - but hopefully we'll get our day on Sunday and we can all breathe easier.

xx Fi and Brennan