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
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great thanks for t blog, good to hear of good progress. if u need any help w anything up in auk i have lovely family there who would love to help, just ask!!! love to all, take good care, hazey n craig n co
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