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