Make mine a double

I’m not usually at a loss of how to start writing these. It just usually flows out. However this is the third time I’ve started writing this. I first started when I knew we were going to go down to GOS to trial the change in meds and to meet the Transplant team. I then tried again while we were down at GOS. Both times I hit a wall where it just became too hard to find the right words. I think it’s down to the subject content. It’s hard to write about and hard to explain. So here goes attempt three:

Flecainide: Isla’s order in the Last Chance Saloon.

Chatting to the Transplant Consultant she made it clear that the ICVD team had thrown them the nuclear football because they were out of ideas. They had tried everything; nothing had worked and adding Flecainide was the last bullet in their arsenal.

My response: “Oh I have a few more ideas before they give up on her!” That’s how I see it; they’ve given up on her. It’s bull that they’ve tried everything. They didn’t even want to do the Flecainide plan. Mixing two sodium channel blockers was a big no no and it wasn’t even their idea. The plan came from my meddling and reaching out to the top Long Qt doctors worldwide… even then Ackerman and Schwartz wouldn’t go there, it was straight to transplant after the Denervations. I’m really grateful to Dr Brugada for sharing her knowledge and experience both with me and with Isla’s team. The thing that grates me is, would the team at GOS have lobbied the same doctors for assistance if I hadn’t bothered? I wonder if they would have found their way to this plan if I hadn’t intervened and pushed them in that direction? This is why I won’t give up if Flecainide doesn’t have the desired effect. I know of a case where Flecainide did the job for a few years and then had to be swapped out for another drug. Do they know of this case? Dr Starling said Isla is now what will be called ‘anecdotal empirical’ case I.e. An experiment. It’s not the best having Isla as an experiment but given that all these heart medicines are unlicensed in children, they’re technically all experiments.

Isla is now officially on the transplant list which has hit me hard, but I think it’s hit even harder seeing a little girl sadly die waiting on the list for a heart and lung transplant. I am glad Isla is on the list but hope she never needs it to happen. The plan is for her to pretty much always be on the list even if things look stable. Given the waiting time for a non-urgent 15kg child is around 1-2 years we can let her slowly climb the list and when she gets near the top delist her and relist her back to the bottom. If things suddenly deteriorate she can then be admitted to hospital and listed as urgent but at least she will already be listed and known. The transplant team agree that the best option for Isla would be to exhaust every avenue of medication before resorting to transplant as although techniques and practices along with rejection medications have improved and improving year on year, it is still a life limiting procedure. I say life limiting, people with heart transplants generally are living 15-25 years now, which is great… but it would mean Isla only reaches 20ish. Now who knows what’s going to happen medicine wise in 20 years. Techniques and medicine are always improving so that 20 years will probably become 30 years. Hypothetically, technology will also improve and Isla will be able to have an Iron Man style heart which will power her and she’ll be able to literally fly. For now, if Flecainide gives scientists a head start to perfect the Arc Reactor then we’re on to a winner.

In herself Isla is doing really well. She’s managing on the lowest dose of Mexiletine she ever has. She’s now on 60mg 4x a day. When she had the ICD implanted March 2019 she couldn’t manage on 70mg 4x a day and had episodes of VF, so safely getting down to 60mg is great… it’s still not as low as they would like or is recommended but it’s a start, and you can really tell. Isla’s eye contact is getting really good and she seems so much happier and interactive. The Flecainide is only on the lowest therapeutic dose too, so we have lots of room for manoeuvre. It’s all pretty positive on that side of things.

I, however, have been really struggling. Isla going under the transplant team meant that psychologists became involved again, just as par of the course… the transplant assessment and chat isn’t easy. I think I underestimated how hard it all was though. After talking to the GOS psychologist I’ve had awful heart palpitations myself and recently had terrible daydreams and nightmares. Having repetitive dreams carrying your child’s coffin at her funeral and giving a speech at the Wake is, well, terrifying… send the white coats. I feel broken. Yesterday I had a meltdown watching GoggleBox where they were watching some ambulances dispatch show and a man needed CPR. It flashed me back to when I was doing it to Isla. I’ve completely redecorated the living room, where it happened, changed the carpet for laminate and everything, partially thinking it would help… it hasn’t… but it looks good still!

I am going to go for face to face therapy now rather than over the phone, as I don’t really get on with phones. In fact at the moment every time my phone starts to ring I want to instantly throw it as hard as I can at the nearest wall. Phones are for texts, emails, social media and games, not calls!

I am lucky to have a supportive cast around me who help me on a day to day basis and pick up the slack when I’m really struggling if Isla has had a party night or something.

Isla’s Care Plan has also now been updated to allow for Isla being at school all day, all week… that will be another stressful period but also a milestone I am so happy that she can hit and I am looking forward to seeing her progress and learn and develop even more at school! If anyone needs me I’ll be the totally grey one rocking in the corner.