Meg is sitting on my knee and is going to tell me what to say today (she chose the title!).
Guy went to hospital on Friday and had the next increase in drugs. It went well. However, despite what Bevan was told last time, he still has another increase to go. He has put on half a kg which is great, particularly as they are happy it is weight and not fluid. He's now 10.5kg and has his mum's thighs starting to make a comeback! He just looks so much healthier than he did a couple of months ago at 9.2kg and bones...
HFDHHHHHHHHRFYT 6ERT65R465RT4R6RTYRRY5RT5T5TTTTTTTTTTTTTTTTTT
(As I said Meg is sitting here...)
This weekend Meg went to go to dancing, but it doesn't start until next week so she wore her dancing dress all day. Then Meg and I had a special 'mum and Meg' outing to get bookshelves for the kids new room. We picked up lunch from the "nugget shop" (you know the one with the big golden things...) and went to watch the planes land and takeoff at the airport. It was quite fun with the wind buffeting the planes around (fun to be on the ground anyway!).
Today Meg has had another special outting with Aunty Kat to the museum where Aunty Rachel and Cormac were. She's also had a couple of hours playing with Bryn so we are looking forward to a good night's sleep.
Hope you are all well and those in NZ haven't been too blown around by the recent storms.
Tess x
Saturday, July 26, 2008
Friday, July 18, 2008
All quiet on the home front!
Who am i kiddin??? if you know Meg & Guy you'll know that that is an un-truth! It is a little more relaxin as their new room was finally finished in the holidays which means they spend a lot of time in there! - see below.
Guy has been back at day care this past week (Tues & Wed) and has slotted straight back into the routine - he basically doesn't care when you leave. He has been goin nuts over the rabbits & guinea pigs (Bonus - pets at daycare and none at home, just the way i like it!).
We are off to the hospital next Friday for his last increase of carvedilol (beta blocker). It will double his current level of the drug - will let you know how it goes next week!
Bye for now!
Guy has been back at day care this past week (Tues & Wed) and has slotted straight back into the routine - he basically doesn't care when you leave. He has been goin nuts over the rabbits & guinea pigs (Bonus - pets at daycare and none at home, just the way i like it!).
We are off to the hospital next Friday for his last increase of carvedilol (beta blocker). It will double his current level of the drug - will let you know how it goes next week!
Bye for now!
Monday, July 7, 2008
A bit too much about me
I had my Dr appointment with Dr Ivor Gerber at Greenlane yesterday. Aunty Livvy came with me which was invaluable as most of the session covered the family tree. Livvy knows all about it (she is married to Mum's brother, John) while I'm a bit clueless how everyone fits in.
Ivor seems pretty convinced that my left bundle branch block and Guy's cardio myopathy are related, though the severity of Guy's condition so young would suggest other 'factors' are at play (possibly mix of genes, environmental or a gizzilion other possibilities). A nice bit of parental guilt to throw in.
Ivor's theory was only reinforced with a number of young deaths from heart issues through mum's family tree (including my maternal grandmother and her brother). We are seeing if we can get coroners reports to assist the discovery process.
It turns out that Uncle John also has Left Bundle Branch Block. Isn't that nice - bonding! His was discovered 16 years and hasn't changed, which is encouraging. Again, the familial link.
LBBB is basically faulty electrics in the heart which "usually indicates underlying cardiac pathology". It may do nothing, or it may get worse and become a serious concern, such as cardio myopathy. Ivor isn't recommending drugs at this stage (similar concoction to Guy) but has said I am free to seek a second opinion. I'm not sure I will, but I'm sure many of you will give me yours (not sure they count as 'second opinions'!).
What now? I've had blood taken which is being tested for heart function - measuring enzymes heart muscles produce (or something!?). We expect it to all be normal, given the minor state of my LBBB. Ivor will also refer us to the genetics team and we may get our blood genetically tested. It is pretty hard to identify genes, but there's a slim chance...
The only (earth shattering) advice Ivor gave was that I shouldn't drink heavily. I probably should also get off my chuff and do exercise... but that sounds a bit extreme to me! Ivor suggested I should be concerned if I wake up tired... umm... who doesn't?! So added the more obvious racing heart, breathless, fainting bits in (go on, sister G, you've already diagnosed yourself!).
Immediate family members can use my notes to get ECG's wanted. The results checked by a cardiologist and send them to Ivor (mine were so small they were dismissed at first). Extended family members - (particularly Pinfolds and Macs) all knowledge of family trees would be great!
Great news - Guy has had a couple of hours at CK (daycare) this morn and loved it. He and Meg are in great form and looking forward to meeting their "4th cousins" (!) next week.
Ivor seems pretty convinced that my left bundle branch block and Guy's cardio myopathy are related, though the severity of Guy's condition so young would suggest other 'factors' are at play (possibly mix of genes, environmental or a gizzilion other possibilities). A nice bit of parental guilt to throw in.
Ivor's theory was only reinforced with a number of young deaths from heart issues through mum's family tree (including my maternal grandmother and her brother). We are seeing if we can get coroners reports to assist the discovery process.
It turns out that Uncle John also has Left Bundle Branch Block. Isn't that nice - bonding! His was discovered 16 years and hasn't changed, which is encouraging. Again, the familial link.
LBBB is basically faulty electrics in the heart which "usually indicates underlying cardiac pathology". It may do nothing, or it may get worse and become a serious concern, such as cardio myopathy. Ivor isn't recommending drugs at this stage (similar concoction to Guy) but has said I am free to seek a second opinion. I'm not sure I will, but I'm sure many of you will give me yours (not sure they count as 'second opinions'!).
What now? I've had blood taken which is being tested for heart function - measuring enzymes heart muscles produce (or something!?). We expect it to all be normal, given the minor state of my LBBB. Ivor will also refer us to the genetics team and we may get our blood genetically tested. It is pretty hard to identify genes, but there's a slim chance...
The only (earth shattering) advice Ivor gave was that I shouldn't drink heavily. I probably should also get off my chuff and do exercise... but that sounds a bit extreme to me! Ivor suggested I should be concerned if I wake up tired... umm... who doesn't?! So added the more obvious racing heart, breathless, fainting bits in (go on, sister G, you've already diagnosed yourself!).
Immediate family members can use my notes to get ECG's wanted. The results checked by a cardiologist and send them to Ivor (mine were so small they were dismissed at first). Extended family members - (particularly Pinfolds and Macs) all knowledge of family trees would be great!
Great news - Guy has had a couple of hours at CK (daycare) this morn and loved it. He and Meg are in great form and looking forward to meeting their "4th cousins" (!) next week.
Friday, July 4, 2008
Pictures of Latest Hospital Visit
Another Guy Pinfold masterpiece - amazing use of colours!!!!!!!
Guy is still an excellent patient and after six blood pressure test could probably have done the last one by himself!! In case you are wondering that is not a ginga strip in his hair - it is orange paint!
Hangin out in the waiting area - the house was/is a favourite and kept him occupied for a lot of the time.
The rest of the time we spent in the playroom (painting) or in the cafe - is enthralled by the lifts racing up and down. The lifts are in an atrium are, so you can see them whizzing up and down - gave dad plenty of time to read the sports page & drink his coffee while Guy watched them.Thursday, July 3, 2008
Drugs are good!
Guy's increase went without a hitch this morning so was home by lunchtime. Just one more increase to go for the Beta Blockers. There was no issue getting to the hospital either (with the truck blockade)... in fact it was probably the quickest trip yet!
Have a good weekend
Have a good weekend
Quick response to couple of questions
Some have asked a couple of questions which others might be wondering about.
If you scroll down to the Xray of Guy's chest taken the night he was admited (a lifetime ago) you can see the large white mass. Well, that's his heart. Needless to say it should be about the size of a small apricot, rather than the whole orchard!
Long term prognosis - it's hard to tell. There are some scary statistics on survival rates in kids out there on various websites. We are relying on medical science doing what it needs to do. It has saved his life many times over just through the drugs that are available now that weren't a few years ago. Quite literally one of them is less than 3 years old and has been his own miracle drug. A few more of those will be great! Some of you have forwarded some really interesting articles through. Please keep them coming if you find them.
If you scroll down to the Xray of Guy's chest taken the night he was admited (a lifetime ago) you can see the large white mass. Well, that's his heart. Needless to say it should be about the size of a small apricot, rather than the whole orchard!
Long term prognosis - it's hard to tell. There are some scary statistics on survival rates in kids out there on various websites. We are relying on medical science doing what it needs to do. It has saved his life many times over just through the drugs that are available now that weren't a few years ago. Quite literally one of them is less than 3 years old and has been his own miracle drug. A few more of those will be great! Some of you have forwarded some really interesting articles through. Please keep them coming if you find them.
What next? Once he's on the optimum drug levels (and the blood thinner / rat poison) it will hopefully be a case of monitoring him from time to time to see how his heart is and keep the drugs going. We'll have to continue to be a bit more paranoid about fever type bugs, but hopefully get him back to daycare a couple of days a week.
If you don't ask... This might be a bit cheeky, but you keep asking so...
Another idea for assistance - some of you will have read on here about good friends up the road Reece (who helped with wallpapering last weekend) and Bridgit (who constantly looks after and feeds our kids and us!) and their 2 kids Bryn (Meg's mate) and Eva. Bridgit and a friend have entered the Cure Kids Auckland to Queenstown Challenge where they have to get to Queenstown on $10. It is a fundraising exercise and they have to raise $7000 by October.
Cure Kids are a supporter of the research team we are linked in with who look at cardiac diesease in the young. They are a great charity who support enormous reasearch into kids dieseases. http://www.fundraiseonline.co.nz/BridgitandLeah/ This is their website. If you have any ideas on how to raise some $ or connections with companies who may donate goods or services for auctions, or just have some spare cash, this is a great cause.
Tuesday, July 1, 2008
Another cold
A quick update before Guy wakes.
On Saturday morning Meg started coughing at 2am. By 3pm she was exhausted and couldn't talk for all the coughing. I took her to the emergency doctor who suggested she may have the chicken pox virus (some weird spots on her body) and possibly a low grade chest infection. Given Guy's situation I think she was being safe rather than sorry.
Guy and I then headed to the Hod Hops place (Nick and Rachel's) for the next couple of days to try and avoid the spread of bugs. Guy had a lovely time hanging out with the big boys and ate them out of house and home.
However, it hasn't stopped him getting another snotty nose and a bit of a cough - nothing like Meg's was/is... yet. We'll just have to see how things go and see if he's well enough to go into Starship on Friday to up the meds. It would be good if he is as there is still another increase to go, and it's been 5 weeks since the last one.
The carpet went into the spare room today. Very exciting. Thanks to Reece who came to help Bevan wallpaper on Sunday afternoon. They have done a great job and now it just needs painting... All volunteers will be fed and watered!
It will be great to be able to put the kids in there to play and, eventually, sleep.
I hope all NZers are keeping warm in these hideous storms that are keeping us inside. I have taken to using Bevan's 'special' trip for the kids - Bunnings Warehouse playground! (For non locals, it's one of the major DIY superstore chains). It's great - you can get a coffee right beside the playground and there are never any other kids there mid week! Meg took the opportunity to show me the curtains she picked out... mmm. nuff said.
Happy birthday to Aunty George (hope you've recovered from your night out), Jempa (who said is big birthday plan was to move sheep - live it up!) and Reilly for Thursday - can't believe you are 10!! xxx
And to all those who suffer under another year round now... (there seem to be a mass of us).
Take care allx
On Saturday morning Meg started coughing at 2am. By 3pm she was exhausted and couldn't talk for all the coughing. I took her to the emergency doctor who suggested she may have the chicken pox virus (some weird spots on her body) and possibly a low grade chest infection. Given Guy's situation I think she was being safe rather than sorry.
Guy and I then headed to the Hod Hops place (Nick and Rachel's) for the next couple of days to try and avoid the spread of bugs. Guy had a lovely time hanging out with the big boys and ate them out of house and home.
However, it hasn't stopped him getting another snotty nose and a bit of a cough - nothing like Meg's was/is... yet. We'll just have to see how things go and see if he's well enough to go into Starship on Friday to up the meds. It would be good if he is as there is still another increase to go, and it's been 5 weeks since the last one.
The carpet went into the spare room today. Very exciting. Thanks to Reece who came to help Bevan wallpaper on Sunday afternoon. They have done a great job and now it just needs painting... All volunteers will be fed and watered!
It will be great to be able to put the kids in there to play and, eventually, sleep.
I hope all NZers are keeping warm in these hideous storms that are keeping us inside. I have taken to using Bevan's 'special' trip for the kids - Bunnings Warehouse playground! (For non locals, it's one of the major DIY superstore chains). It's great - you can get a coffee right beside the playground and there are never any other kids there mid week! Meg took the opportunity to show me the curtains she picked out... mmm. nuff said.
Happy birthday to Aunty George (hope you've recovered from your night out), Jempa (who said is big birthday plan was to move sheep - live it up!) and Reilly for Thursday - can't believe you are 10!! xxx
And to all those who suffer under another year round now... (there seem to be a mass of us).
Take care allx
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