Thursday 17 January
We were back - this time to try out a new medicine for Little S, an ACE inhibitor that was supposed to relax her arteries and allow blood to flow around her body more easily.
However, they had to check that her blood pressure didn't fall too much, which can happen with this sort of drug.
So we were in for most of the day, with a lot of the time spent checking that the new drug didn't have any bad side effects - and it seemed to be fine, which means that Little S is now on five different medicines every day, plus we also have a whole cocktail of super drugs to be used in emergencies in case anything goes wrong.
Little S also had to undergo the trial that is the blood test - for some reason the nurse looking after her that day refused to believe that she would find it difficult to get blood (even though we reminded her that Little S was notoriously tricky) and it was only after two attempts failed - very uncomfortable, loud and tearful for Little S - that she agreed to call in the doctor that has been so successful on the previous occasion: Dr J.
Needless to say, Dr J saved the day.
Meanwhile, we let Dr D know that we'd sent Little S's echo and angio images to Boston Children's Hospital and that a Dr T would hopefully be in contact soon with their opinion. And we were also trying to get the same images to the world renowned Dr H at Stamford -this was proving to be a bit trickier. We also talked about a famous surgeon in Birmingham, Dr W, and Dr D agreed to ask him as well (although he said that he'd be surprised if he said anything different to GOSH).
But you've got to try every avenue - never give up.
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