Good result at BCH!!

Well we went back to BCH yesterday with much trepidation, hoping beyond hope that the fluid had finally gone. The nurse always does the usual obs (sats, weight etc) Thomas is now slightly heavier than when he went in for his operation. His sats started at 90 but then settled at 88, Paul and I felt sick and were sure that the fluid must still be there. We then saw Dr Chikermane (Thomas' consultant) he asked us how Thomas had been and we explained that he'd been doing very well but we had just got an 88 sats reading. He was very relaxed and said they group anything from about 87/88-92 together and had we hung around a bit longer we would have probably got a reading of 90 ish. That's the group they expect Thomas to be in at this stage and more importantly it's where they want him to be. He said they'd be more concerned if his sats were 98 and he was listless and tired. Thomas had a fenestrated fontan operation so a small hole was left in the gortex tube through to the heart to act as a pressure valve. This helps protect the lungs but does mean that the children are still slightly cyanosed. He said the hole might well close over within the next couple of years or so as things settle down and as a result his sats will increase a little bit. He also said that Thomas will be able to achieve more and more once his body has built up stamina. This is exactly what we thought but it's always good to hear it from them.

He then did his echo which showed NO fluid :-) woop woop woop! He said the echo looked 'very good' and he was 'very happy' with him. Phew! What a relief! He has reduced some of his medication and doesn't want to see him until October. Yes, OCTOBER. How great is that!

It's only now that we actually feel like we're actually coming out of this whole experience. It's been really really hard. Harder than we ever imagined and in a different way too but the main thing is Thomas is doing well and whilst we know hospital visits are always going to feature in our lives it feels wonderful that we have a few months off. Well done Thomas!