Friday's appointment at Dr Ram's Rapid Access clinic has been booked since the day we brought Martha home in October.
My main worry on our way there was the fact that her wound had become infected again, I convinced myself that because she only had her operation 6 weeks earlier - there couldn't really be any big changes in that department.
We usually catch the 07:22 train and have appointments for just after 11am - but this appointment was for 3:30pm so we caught a later train which got us in to London for 12:38. This meant Martha had time to have a decent sleep in her pram and we could all have some lunch before heading to the Hospital.
Martha started crying as soon as her name was called to have her Obs done. As she's a little older now we don't have to strip her down and put her on the scales to be weighed - she's just asked to stand on the scales on the floor. She was petrified of the blood pressure cuff and shrieked as it's grip got tighter around her calf. Her BP was quite high for what I am used to - but nothing was said about this. Instead of using the sats probe that we're used to on her foot, they put the clamp on her finger which gave an initial reading of 84% and creeped up from there...the nurse logged it down as 95% but I did see it at 97%.
We saw Dr Georgi Christov who knows Martha really well; but he hadn't seen her since March of this year (when he told us that she would need to have this operation) I was hoping that we would see Dr Ram as he was the one to discharge us in October and he had seen her last ECHO. Georgi even said "Martha Grace is not a patient for Rapid Access" as her anatomy is so complicated.
He read her latest notes and said "Oh my, this operation was much more complicated than we had anticipated. Professor Tsang is a Hero, they performed a miracle!" Mark shot me a look and I knew what he was thinking...that we spoke to the Consultant Surgeon (Dr Ben Davies) the day after the Operation and he had been happy with how the operation went, he didn't give us the impression that it had been more difficult than they had expected.
We told him about Martha's recurring wound infection and he jumped straight on the phone to Theatre asking for a Surgeon from Professor Tsang's team to come and check her wound.
The ECHO itself seemed to be over in no time at all. Georgi confirmed that there was still Obstruction present just below the Left Ventricular Outflow Tract - but we know this because Ben Davies told us they had resected as much as they could but we're running the risk of upsetting the patch for her VSD. But the velocity did not exceed 3.5m per second so he wasn't concerned and wasn't suggesting Surgery again. The patch augmentation done to her ascending aorta looked fine.
After the ECHO a surgeon arrived to look at Martha's wound, we explained how her scab had caught on her clothes and started bleeding and that she was already on a 10 day course of Flucloxacillin. There wasn't any discharge from the site but they took a swab to send to microbiology and was confident that it didn't need any stitches - just for us to carry on giving her the antibiotics.
When we got back on the train to come home we started messaging Family and Friends to let them know how the appointment had gone and neither of us really knew what to say. We didn't get bad news, but we didn't get great news either. To be honest we're none the wiser than we were on the day we left Hospital on the 20th of October. Maybe if we'd seen Dr Ram I'd have felt better because he saw her on the day she was discharged and he has seen the post-op ECHO's. Now we are waiting for an appointment to come through for the end of January as our primary Consultant (Dr Ian Sullivan) goes on leave in February and Georgi wants him to see Martha. One thing for sure is that Martha's Heart is a complicated one and we totally made the right decision to bring her to Great Ormond Street.
Now I think I'm ready to start looking forward to Christmas, now I can start looking forward to the things that I wouldn't let myself think about until this check-up was out of the way. On Saturday afternoon we took the girls out to Pringles for Tea and Cake (they had a Babycino) and started getting a few more Christmassy bits for the house because I wanted to get the tree up this weekend (pics will be up later in the week) I have a few more things lined up for the kids closer to Christmas too which I can't wait for.
Thank you all for your continued support.
GM
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