Home again

Hi, we are home again. I'm delighted to say we were only in hospital for the day on Friday and were able to leave by 7pm. Guy has tolerated the increased dose of carvedilol. We will be in again every fortnight on Friday's for increases. All going well this will only take 2 more visits for the carvedilol.

I had enough time to pin down doctors for masses of questions (mainly raised through doing my own internet research), the dietitian to check about how we can get Guy to gain weight (a massive list of what you would normally think of as 'what not to eat'), and the team who are looking at inheirited cardiac diesease in under 35yr olds (the 'young', sigh, we no longer qualify...!). More on these another time.

Just wanted to let everyone know we are home and doing well.
Tx

Starship here we come

Guy and I will be in Starship for 24 hours from tomorrow (Friday) morning to increase his level of carvedilol. We will then be in every fortnight on the Friday to increase until he as at his optimum (I have no idea what that is yet) and, I assume, on the Warfarin (sp?) blood thinner (aka rat poison...).

I've been doing my homework online with UK, US and Australian cardiomyopathy websites which have been very informative and have loaded me up with questions for our medical team.

Heart Children are having a family day on Sunday so we may go along.

Aunty George, hows the ankle? Cousin Reilly, hope you feel better soon. So good to see the rest of the family extracting value from the health system.

NZers have a great long weekend and drive safely if you are on the roads.

Tuesday

We had another lovely weekend with lots of visitors including the Afflecks from Gore, Timmy and the girls; as well as visit to Cormac's place, and a walk up to Meg's old daycare, Minimarc, for the bouncy castle with Bryn and Eva.

Here are Meg and Bryn on the slide at the park

and Guy, Charlotte Affleck and Meg on the deck.

We are still waiting to hear when our next hospital appointment is. In the meantime Guy is in good form. He wonders why he has to go back into the highchair... but you get the idea...

Lots of good news and things happening the week - beautiful Bella from Wellington gets to go home tomorrow from Starship. Her mum, Maxine, and I went to the movies on Saturday night to see Second Hand Wedding. It was a great watch. We'll keep in touch and hope they have a great trip home. Bella might get to have her 1st birthday party after all.

Heart Children have their appeal on (fantastic cause if you are looking to give) and you may remember I mentioned the heart stopper plunge where you have to get into an icey bath or pool for 5 minutes. I'm delighted to say the Auckland event is over subscribed so there is no room for another team... maybe next year!

They have other fundraisers including the heart kids who do the last 5 kms of the Round Taupo challenge... yes, those littlies who always blat past me on the final stretch. I think we might put a team or two together this year and raise some cash. Let me know if you are interested in cycling or sponsoring.

Heart Children also have a family day this Sunday which we will go to to meet some other parents. Unfortunately there are no other families with Cardiomyopathy registered in Auckland, but we all have the dickie tickers in common.

We've been hearing about some amazing research which is going on and, in talking to the Heart Children co ordinators, medical solutions to children with heart problems has improved enormously. I'm keen to get into non traditional medical areas to work with the drugs to give our wee man the best possible outcome. All ideas welcome!

On a more personal front - congrats to Monty and Sarah, such great news and we look forward to seeing the ROCK! Cee and Pete Motion are almost home - yah! Have a safe trip back. Can't wait to see you.

Monday visiting

Meg and Guy went and visit Lou and Imogen O'Rourke this morning, with Dad.

Check out Mr Casual, who just about needs his first haircut...

Thursday 22nd

Today is Guy's 16 month old 'birthday' and has been my first day at work. Both seem to have gone well, bar the pounding headache I now have!

Apart from a small reaction where the new cocktail of drugs bugged Guy's tummy a bit, he is doing really well. He's getting very cheeky and needs to get back to daycare to learn some manners! We've had brief stints when dropping Meg off and picking her up where Guy has gone back to say hi to his buddies at CK. Generally he flirts, sits, eats and leaves... sound like a boy?

We are awaiting the next appointment at Starship to up the Carvedilol from 0.45ml doses. Probably next week sometime.

Top Tip Thursday

Does everyone know about ICE numbers for your mobile phones? It stands for In Case of Emergency and is what ambulance crews look for should you collapse. They DO look so please, if you haven't, make sure you put them in. You can have ICE 1, ICE 2, ICE 3... etc in case they can't contact your first person.

This is a UK initiative that has gone global... so wherever you are.

Take care
T x

PS Meg is learning Thomas the Tank Engine in Mandarin and she doesn't even know it! Thanks Zara!

Sunday night

Guy is now on his latest medication - Cardvilol (or something!) - a beta blocker. We had our 24 hours in Starship getting slowly onto them. guy loved the attention and was treated like the returning hero by the staff on 23B. Apart from a small glitch where he fell off a chair in the play room minutes after having his first dose, bringing nurses and doctors running, he was fine. Turns out he was just being a bit uncordinated (I know, hard to believe of a child of mine...) in his dismount, rather than his blood pressure dropping through the floor.

Never short of an excuse to flirt, Guy managed to find himself a new girlfriend while we were in - 12 month old beautiful Bella from Wellington. Bella has the same condition - cardio myopathy - and has been in Starship since last Thursday. Her family are looking the way I'm sure we did in the first week. I've been in to see them again today, and to drop off some of the meals we still have from all the fab cooking friends have done. It's nice to be able to compare notes and know what they are going through. We are going to keep in touch and form our own support group :)

So, next step will be to increase Guy's drug dose which will require another day in hospital, but the doctors have given us a 'week off' so we're not sure when that will be. This week I'll be following the glitches in my ECG to see what that all means...

Have a good week all x

Beatson's - I have no way of contacting you (keep forgetting to get email address of those who have them) but thank you for the fab package!

Thursday

Here are a couple of shots of Guy and Meg. Guy loves climbing and there's no chance a dickie ticker will slow that down (unfortunately!). Note the new hall cupboard... Meg and Guy have matching Woody jammies and Meg insists they both have to wear them (at least it has got Meg out of Eva's old High 5 pj's long enough to wash them!).

Off to hospital in the morn for the night to get on beta blockers. Guy's not had such a good day, and was sick and off his food a bit so it seems he is coming off the wonder drip. Hopefully he is still well enough to get onto the BB's without too many probs.

We dropped in to Collectively Kids (daycare) to pick up Meg. Guy loved being back there, if only very briefly, and wasn't keen to leave again. We look forward to being able to give him that normality again as soon as possible.

Wednesday

Update from Starship clinic appointment
We had the appointment at Starship's Heart Clinic today and it went as well as it could have. The good news is that there has been no decline in Guy's heart function, or any other clinical signs, since we left hospital. The Drs are (as we are!) happy with the fact Guy is well 'within himself' and is bright and happy and eating well.

So, we are home again with drug number 5 to add to his tasty formula twice a day - spironlactin (?sp - did I mention how crap I was at chemistry, and spelling, at school?!).

As expected the plan is to introduce new drugs over the next few weeks. Each has its own challenges and risks but is important to be on. The other good news is that Guy won't need to go back onto the levosamenden drip just yet, as he isn't feeling miserable again (the week to 10 day slide). I gather that means we can 'save' the 2nd possible use of it for a rainy day.

We will be back in ward 23b on Friday for at least 24 hours as they introduce the next stage of drugs - beta blockers. The side effects can be pretty miserable so Guy will need to be monitored closely. All going well he'll get slowly, straight onto them. If not, they'll try again in another week or so, and possibly with the help of the 'rainy day' levosamenden.

Once the beta blockers are in place we need to then look at another blood thinner, which I have forgotten the name of but is common for adults who need such things. With a large heart chamber it is important that he is on a thinner that is better than the asprin (apparently!). Again this is a very tricky one to get right, particularly is such small people as Fly Guy, so will be another hospital admission and careful monitoring.

Other good news is that it is not unheard of for children to get improvements in their heart function just on the heart drugs, even if it isn't viral. On the 'cause' they are doing more investigation and aren't yet convinced that it is genetic. I still will hear from the cardiologist about my abnormality at some point and Meg is booked in for an echo and ECG in June.

Many many thanks
Rach Butterick has been a complete star and came to stay from Sun - Tues and has done dishes, washing, folding, entertained kids (and even changed a stinky Guy nappy, much to her disappointment!). Thank you so much Rach. I hope I never have to return the favour in the same way - looking after a family of 6 could finish me off! But we certainly owe you hugely.

When a Kyle carrot cake comes to town, the old school crew crawl out of the wood work! Seriously, it has been wonderful to see Cat, Kirt, White, Nic and Luce here.

Sarma is back in Auckland as is "Grannie Helen" (sis in law Rachel's mum, and we have seen "Grand Dave" this week). So Meg and Guy will be thrilled, not to mention the goodies that have come with Sarma.

Messages, food and parcels continue to come from around the country and the world and we thank everyone so much. We know that Guy is doing as well as he is because of all the positivity and prayers we are getting. Thank you all. It is incredibly humbling.

Final note of possible madness...
As Aunty Rachel mentioned it is Heart Children's appeal week. Please, if you can and would like to, give to this. They have been a great support for the 3 unfortunate weeks we have had exposure to them.

Alternatively we may be taking the heart children plunge into icey water next week for sponsorship. I barely swim in the heat of summer so I'll be looking for generous dontaions! Watch this space. We are looking into this... we may even rope some of you into it... Reece?

take care
Tessx

Monday

We've had a great weekend with Guy and Meg having lots of fun with lots of visitors.

On Saturday afternoon we had our CPR training organised by Heart Children, free for heart families. It was great to do and I think everyone feels much more informed about what the latest practices are for CPR and choking in children and adults.

The kids watched DVDs and the adults (plus Reilly) were educated. Thanks to Rachel and Nick for the catering and Reece, Bridgit, Noos, Dave, Moira, and Kat for giving up a few hours on your Saturday night. It felt wonderfully normal as a 'pot luck' dinner as well.

On Sunday Rach Butterick and Cat Williams were delivered from the airport by Lucy Hall. We had a great gossipy lunch and caught up with the school reunion photos while Meg waited for Sam to arrive... Cat taught Meg to play noughts & crosses and 'hangman' (yes Meg is only just 3 and didn't catch on). Rach has been doing what Rach does best for the last couple of day - being incredibly helpful and keeping us fed and watered. Thanks Mike for letting her come away!

Nic, Louise, and Gimmy O'Rourke have been over today and Guy and Meg have loved it. Guy's eating almost normally which is wonderful. He is just getting more and more energy and happier every day. We don't seem to be yet seeing any effects of the levosamden wearing off (it's been over a week and it should last for a week to 10 days).

Wednesday's appointment is the next medical milestone and we'll know more then.

Bevan has been busy building a storage cupboard in the hall so can't wait to have it finished and, after 5 years, have a linen cupboard. Next DIY project is to get the big spare room finished and get the kids, or at least their toys, into it. Going forward we may need Guy in his own room.

Thanks for all the messages, they are lovely to get. We hope you are all well.
Tess

Friday check up

Very quick update for today. Guy has had another great day on very good form. We've had a quick 0chec0k an0d the 000000000000000... Guy's helping me type this...
The Dr is happy with how he is, no real chenge since we left hospital but his heart rate is down, which is great (around 110-115 from his previous 150ish).

They've taken blood and we'll get the results next Wednesday, I guess, when we have the next clinic appointment (with Dr Tom Gentles).

Clinically they might not see much of an improvement, but we certainly have. He's giggling, smiling, chatting constantly, and even feels well enough to give his big sister the occasional 'don't argue' (as Bevan calls it - a big shove in the chest). He's little though, at 9.2kg, still a very sick wee man, and his heart and liver are still enlarged.

Levosamenden (phonetic spelling!) is the drip which I have mentioned previously, he was on last week for 30 hours. It's a bit of a wonder drug and we are likely to see some decline in his health early - mid next week. Horrendous, but at least we have been warned. It is very possible they will give him another dose of it next week. Unfortunately it seems it only works twice, if you are lucky. What we hope is that they get all the other meds working full steam to have him feeling as well as possible, and a bit of a miracle wouldn't go astray...

S'all for now. Vincents are online for Skypeing... could be chaos!
Tess x

Welcome Home Guy

The Pinfold Hodsons had their first night together for two weeks last night. YAY! Apparently, everyone slept through the night! Meg and Guy woke up giggling and chatting, loving being back in the same room together. Cormac and I have been round for a visit in the lovely warm living room this afternoon. Guy ate avocado, ham and yoghurt for lunch (tiny amounts, but still good progress). Taking his medicine was a bit different. We gave Cormac some water on a spoon which initially made Guy take his from a spoon. But he is an intelligent chap and caught on quickly. After the first spoonful, no amount of Cormac pretending would convince him to take any more. So it was back to the syringe. As an observer I can let you know that this will be a VERY stressful thing for Bevan and Tess to have to do multiple times a day.
Bevan took the photo of the two boys in the hallway. The other photo shows the joy of doing something normal like putting both children into their PJs together.
What can we do to help?
As extended family and friends, we all feel that we want to be able to do something to help make a scary and stressful time easier. Having you read this blog is a real support to Bevan and Tess. They are also really appreciative of all the practical help you have been giving and the cards and letters of support.
Unfortunately, they had to invest in a lockable mailbox last week. They had parcels ripped open and things taken off their doorstep... I will leave you to form your own view on the particularly vile human beings who do this. You can also send parcels care of Nick and me at 18 Lingarth Street, Remuera, Auckland, New Zealand. We have a big scary fence and secure front porch!
Apart from your prayers, I thought I would give you some ideas of really helpful things you could do:
To help Bevan and Tess themselves:
- Hanging mobiles, wall stickers, glow in the dark stickers etc for decorating Guy's soon to be refurbished new bedroom (re-insulation and non-allergenic carpet being done soon). If Guy is in bed, he likes looking up at the roof and the things around him.
- Vouchers for petrol, hardware, groceries or the chemist. Thanks so much for the petrol vouchers already sent, at $17 per day parking at Starship, not having to pay petrol makes a difference.
- Regular emails and texts of support.
- Meals when Guy is in hospital. So many fabulous people have been on dinner duty over the last two weeks. We need to keep mummy, daddy and Meg as healthy as possible.
To help Starship:
The Cardiac ward at Starship is a sobering place. It is full of shellshocked parents and very ill children fighting for their lives. When Guy is there he is not allowed to leave the ward to use the facilities in the rest of Starship. There is a playroom in the ward where Meg and Guy have enjoyed playing games and making art. Aunty George and Sarma found the "playroom wish list" and have already started sending bits and pieces to ensure that over the coming months/years when Guy is there, he and other children have lots of activities to do with their parents and friends. You can send items for the playroom - paper, coloured card, stickers, felt tips, glue, glitter pens, paints, balloons, games, puzzles, felt shapes etc. They also need a baby jolly jumper and the little bubble machines worked really well for entertaining Guy.
To help Heart Children:
Heart Children New Zealand (www.heartchildren.org.nz)is a voluntary organisation that provide education and advocacy as well as ongoing emotional and practical support to help families when they have a child with chronic heart disease. They visited Tessa and Bevan every day in hospital, gave them literature, information about parent groups and petrol vouchers and they are providing the CPR course this weekend for family and friends at Tessa and Bevan's house. They rely solely on donations and their annual appeal is currently underway.

Big e-cuddles to our darling Guy and a special e-hug for his his brave parents and beautiful sister. We love you.
Aunty Rachelxx

Home Visit!

Today we had a great day with Guy allowed out of the hospital for the afternoon to come home and hang out with Mum, Dad and Meg. Uncle Nick popped out of work quickly to say hi and see Guy return to chewing green tomatoes off the plant. It was a great day and so lovely to have him back in our normal surroundings. Not to mention having us all together at home for the first time in two weeks.

As you can see he quickly got back to claiming his spot on the kids couch.

Last night Bevan and I, with CD and Matt, went to the VERY LOUD Foo Fighters which was fantastic. I didn't know all the songs, but didn't let that stop me yelling myself hoarse. It was great to do - thank you so much Noos and Moira for babysitting while we were able to get out, the nurses for insisting we did, and CD and Matt for having a great time with us! I slept very well in the hospital, unable to hear the helicopters landing or Guy's sleep talking, for the ringing in my ears.

Guy has started a new drug, dijoxin (phonetic spelling), which is yet another heart contractor, but this one slows the heart as well. They are likely to give him another dose on the drip drug that I can never remember the name of that only lasts a week. So we are still in hospital for at least the next week or so, but hopefully with more, possibly longer, visits home over the next few days.

Cardiologists are also looking closely at my ECG to see if I have something genetic which may have passed to Guy and worsened somehow and be causing the issues.

Heart Children have organised a CPR trainer to come and see us and those likley to be looking after Guy, on Saturday, to give us all a course. There have been recent changes to what is recommended so I urge you all to get up to date :)


Meg checking out that the ECG team have all the leads in the right place...


Guy really needed a bath after 2 days of being sick and stuck to his bed, even he knew it. No idea where he found this, such is his familiarity with the ward.


Cuddles and dancing on the bed with Meg to yet more "Love to Sing"


And yet more walking Zeb

A few photos of Starship life

This is Aunty Rachel, posting some photos from the hospital. Meg and cousin Reilly made a little "car" out of a cardboard box. We put a pillow in it and Guy can ride around the ward in style. When he is not hooked up to a drip, one of Guy's favourite pastimes is being taken for ride in the stroller, or taking his "Zeb" (toy zebra) for a ride in the toy stroller, up and down the corridor. He loved doing this with cousins Harriet, Ollie and Will last week. When he is restricted to the bed, blowing bubbles is a great distraction and batting the Eeyore balloon Aunty Noos gave him is also a fave. Guy also has a portable DVD, which he likes to watch with Meg sitting beside him (I think any new DVDs on loan would be appreciated by parents a bit sick of "Love to Sing" !!!). Mummy or daddy can also sometimes take Guy for a little walk pushing the drip machine with them. Like the photo where Bevan is blowing raspberries for Guy, we have seen him smiling and giggling quite a lot - he especially enjoyed waving out the window to Aunty George and Uncle Nick when they left the ward at night last week. He has always been a smiley, cheeky baby and his cruisey, flirty nature belies his current heart rate of 140-150bpm (it should be about 90 and it will get back there.)Big e-cuddles to Tess, Bevan, Megapixel and "Babbee Guyah" (Will's name for him) and thanks to everyone for keeping the support up from around the country and the world.

Sunday

it's a totally rubbish day in Auckland today, chucking down the rain and a bit chilly. Stepping from the incubator temperature of the hospital into the fresh air is certainly a quick way to wake up!

Guy is feeling better again today and took a while to get to sleep last night after being back to walking up and down the ward being nosy.

He's put on weight - 250gms in 3 days - which is good and bad. He is supposed to put on about 50gms a week... Hopefully this just means he is properly hydrated and getting the food to stay put (which it has) rather than that there is a build up of fluid again. It's a delicate balancing act.

this morning we have had Charlie, Nina, Jenna and Erin visit with yummy food, pudding and REAL coffee, then Timmy Sue and Ross with chocolate cake... see the theme? If Guy isn't putting on enough, the rest of us certainly are!

Home for a quick snooze before picking up Meg, who is playing with her fav mate Bryn, and back for dinner. Bit of a restless night for Guy and me (angry dreams... for those who analyse these things... perhaps I'll tell "consulting services" that?!).

We had the nurses visit on mass this morn to tell us we have to both go to the Foo Fighters concert tomorrow, which we have had tickets for for months. They even had a plan in place in case we couldn't get babysitters... so there goes my excuse for not going! Should be good fun and a great night out with Matt and CD. Watch out mosh pit, the oldies are going to be in there!

take care all and keep the messages coming. We love to hear your news
T x

Saturday 3 May

Guy's had his drip removed and has been generally happier today.

The idea is that the meds should kick in pretty shortly. The unfortunate side effects are headaches and nausea so he threw up lots yesterday and felt generally crappy, poor little man. Even his favourite nurse, Jackie from Manchester, could barely get him to crack a smile.

He has made a real impression on the ward as a terrible flirt with all the mums, female Drs and nurses. He is singly unimpressed with the male nurses, esp Matt from Leeds...

We've had Heather Harper and 'Aunty' CD to visit, as well as Aunty's Kat and Rachel, Cormac, and Reilly which was fab! Meg has had a fantastic day with the Hod Hops which has included helping Aunty Rachel with retail therapy.

We have new art and cards from Big Bad Ben, the terrific Triplets, and great new entertainment from many, continuing to clog up our ward room!

Starship Fly Guy

Hi everyone

If you haven't caught up with our news, Guy was admited to hospital last week with Cardio Myopathy. Many of you have sent wonderful messages, wonderful cakes / soups/ dinners and wine (thank you George for that inspiring idea, all very naughty in the hospital, but the nurses turned a blind eye!) and love. Thank you.

I know I've struggled to keep everyone up to date with what is happening so I thought I might do this and you can check it and others can update if we are unable to do so.

So, what's the latest, after 8 days in Starship's Cardio Ward?

After initially feeling much better, Guy's had a rough couple / three days and can't keep food down. He's on new meds to help try and get the heart contracting better, and get more blood to the stomach to assist digestion. Hopefully this works.

It seems we are in a common spiral of having to deal with a maze of symptoms which, while not immediately life threatening, are not assisting in him being in any shape to improve.

We won't know if he is one of the lucky ones to recover from the condition for weeks or months. All pretty energy saping stuff.

Today we were offered the chance to use the hospital's "consultant services". 'The what??' We asked. Yes, it's the fab new PC term for hospital shrink!

Family and friends have been great and we won't need to cook for weeks! I've offered to feed half the parents on the ward.

No surprises that our room on the ward isn't the tidiest.. it is the one that looks like a magazine shop / toy world / playcentre. We've had to move rooms twice today and you can see the orderlies roll their eyes as we move it all. We pile it all onto the bed and balance wee Guy on top...

Meg is all a bit sad about having Guy at hospital and just wants him home to play, as we all do. She's being a fabulous big sister and runs in to cover him in kisses and hugs every day.

Must get some sleep as my night off hospital duty.

Tess