In | Health Update

September 2018



I find it quite hard to believe it has been a year since the last time I wrote a health update. I have written 100 odd other blog posts in that space of time but I have not quite found the time, or desire, to write about the medical side of things. Part of me is sorry for that as I know plenty of you follow our journey quite devotedly but I am also glad that I've managed to deal with the last year without needing to vent it out on the internet. The 12th of September was the anniversary of Ivy's fontan and although it is not a date I wish to celebrate as such, it is impossible to ignore the enormity of such a date in the calendar and the vast mix of emotions that come along with that, so, I felt it was the perfect opportunity to bring this online space up to speed. I wrote a very long update at the one year mark here and thankfully, the thing I am most grateful for right now is that the last year has not been quite as awful as the 12 months that preceded it were.

I explained last year, that Ivy had an operation to place a small hole called a fenestration into her hearts circuit in an attempt to put her into remission of a condition she had developed called Protein Losing Enteropathy. When this was attempted in September, they were unsuccessful but due to the determination of consultants, they asked if they could have another go at the procedure to which we agreed, but only if it was done after our already-rescheduled holiday to Disneyland Paris. Due to the seriousness of Ivy's condition at this point, her consultants were not happy about Ivy starting nursery before this next operation so we made the most of this time together, getting out and about as much as possible between check ups and trying to regain a sense of normality, even if it was to be short-lived.

We went to Disney, and it was everything I needed it to be but just one week after our return, Ivy was back at the Brompton. It wasn't until we arrived that we realised the seriousness of this attempt - 3 surgeons would be alongside her main consultant in the operating theatre in case of complications and no other child was scheduled for that day. It is the longest she has ever spent in surgery and the surgery with the most hope pinned to it - despite having been through this so many times before, it is the most sick I have ever felt. And after all of that, it didn't work. They'd succeeded for all of 10 minutes but Ivy's body was not playing ball - it never does - and we found ourselves back at square one yet again. After such an intense and long surgery, Ivy was placed on PICU as a high blood clot/stroke risk and we were left totally and utterly crushed.

With Ivy's birthday and Christmas fast approaching and knowing the amazing team at Brompton had done everything they possibly could to help her at this point, we asked not to be contacted until the new year so we could spend some precious time together as a family and would start the new year confidently facing any of the challenges that lay ahead. Ivy was then referred to the transplant team at Great Ormond Street Hospital and her case was also put forward to a consultant in America in the hope he could shed some light on what to do next (possibly a complex liver operation which has never been done in the UK before). Which was then, of course, when our miracle happened. We don't know what happened, but Ivy suddenly got better. No surgery, no medication change, no nothing but a routine blood test came back and stunned us all (so much so, her consultant was sure there had been a mix up in the lab). We had no answer but we were grabbing the result with both hands and running as fast as we could with it.

We are so unbelievably happy but it's important to remember this is not a happy ending. Ivy is in such a carefully balanced state, held together by a cocktail of drugs, diet and controlled lifestyle that it is impossible not to worry every single day that our nightmare will one day return - not knowing what it was that improved her health makes it virtually impossible to prevent it from happening again which is an unbelievable strain on my every day anxieties but at the moment, we are living days that I never thought we'd see and that is all that matters. I will never ever take these days where she is happy, looking healthy and able to live relatively normally for granted. Exactly one year since her first fenestration attempt, Ivy started school alongside her peers and I have never seen her so happy. She is exactly where she wants to be, shes made solid friendships with children her own age over the last few months (something she has been unable to do for the majority of her life) and is thriving in the most magicial of ways and we can only hope that this continues now for many years to come.



You can read all posts about Ivy's heart here