Ugh
OK, so yesterday we had - or rather, Jaysen had - a really great day. Did everything he wanted to and was shattered come bedtime. We still can't believe he is six! I keep thinking "This time six years ago..."
Of course, this time six years ago, I was sick as a dog with the Hangover From Hell!
But anyway - we got a letter from Guys Hospital yesterday. The summary reads something like "At your appointment Bethy looked great, see you in six months, but we will take bloods just in case." Well, it turns out that the bloods show she needs her operation sooner than mid-2005. "Early New Year" he said in the letter, which probably means Early January.
The other bummer, is the fact that Bethy is having a "Extra-Cardiac Fontan". The general Fontan involves putting a tube through her heart, but as he insides are all aligned differently, they need to go around the heart. The operation seems to be better anyway, as there is less cutting in heart muscle. The downside to this is that they have never done this operation at Guys.
Her surgeon (an excellent guy called Connal Austin) has been undergoing training to do this operation with the various pioneers in Australia and England, and was going to be doing the operation himself. However, as the date has had to come forward, he is being very good by saying "Let's get someone else in to do it" which puts him up in our estimations about 300%. I suspect he will be assisting, as he knows Bethy inside out (literally), plus it will help him learn.
We don't yet know the name of the surgeon they are getting in, but he is coming from Birmingham Childrens Hospital where they do most of the Extra Cardiac Fontans in England.
Anyway, it put a bit of a dampner on yesterday, and no doubt it will be in the back of our minds over Xmas and New Year. We knew it was coming, but so soon all of a sudden... Ugh. On the other hand, it gives us LESS time to stew and stress about it.
Everyone on all my lists have been really supportive - kind of the point of a support group ;) - putting our minds at ease. We know she's a strong little girl, and always does well in Hospitals, but.... I dunno. You can't explain it really. The fear is there, knowing she is going to have major surgery again.
So - if you only read about our family here, please keep us in your thoughts and prayers. Any updates I get I will post here.
And thanks once again to all our friends on CHD lists and gaming lists - thanks for being there chaps!
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