I'm a live blogger, I blog as and when I have something I feel I want to share...sometimes a few weeks will pass without me posting anything. Recently there hasn't really been much to update you on; we've been tipping away without any incidents worth reporting - Martha has been clinically well, the older two are finishing up school for the summer and I've reached wedding season in work.
We still hadn't received our letters from London following our most recent trip to Great Ormond Street in June, I've been in complete denial and hadn't dared chased them up because I was petrified that I might put some kind of Voodoo over the situation. On Wednesday I bit the bullet and actually phoned Dr Sullivan's secretary. Although nothing has come through the post there was two letters on the system in Martha's file that we should have received last month.
The first letter detailed the findings of the ECHO performed in June and that Dr Cervi (the Clinical Fellow we met that day) and said they would be presenting Martha's case at their departmental meeting and decide on the best course of action for Martha Grace.
The second letter informs us that Martha's case had been discussed at the meeting and that they have
decided that further surgical intervention is required to relieve the obstruction to the Right Ventricular Outflow Tract (which was done in November 2013) and to relieve the Supravalvar Stenosis just above the patch which was augmented in December 2013.
decided that further surgical intervention is required to relieve the obstruction to the Right Ventricular Outflow Tract (which was done in November 2013) and to relieve the Supravalvar Stenosis just above the patch which was augmented in December 2013.
In the letter Dr Sullivan seems sympathetic and says he realises it's "disappointing" that they want to operate again but does add that they "remain optimistic that this can be achieved successfully" - which makes a lovely change from him calling her other operations "Technically demanding" and "Technically difficult".
The booking office should be in touch with us soon to sort out a suitable date, they want to perform a CT scan first (under General Anaesthetic) so that they can get a 3D image of the arteries and a couple of days later they will take her to Theatre for Open Heart Surgery number 4. In the closing paragraph he says "there will be opportunity to discuss the technical aspects when you next visit the hospital, but I think you already have a good understanding of what is involved" - yep...the frightening thing is I know exactly what they're going to do and how they're going to set about doing it.
Although it's not urgent - they do want to get it done before the end of summer.
So we're back to full on memory making mode, I'm hoping to have a couple of weeks with the kids off school before we're down in London again. Anyone with any suggestions for days out that I might not have taken the family to before - please let me know...those memories will be all that will keep me going when I'm in an Intensive Care unit all day and night long.
Thank you all for your continued support...it means everything to us.
GM
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