The hopes and fears of a TOF Mum- part two Elijah’s check-up.

The annual anxiety fuelled check up.

 

Yesterday, I spoke about how I felt navigating my way as a TOF (Tetralogy of Fallot) mum and the lack of real life online parenting stories there are to relate to about this. Click here to read part one.

Part two is below, and is a small glimpse into our world with Elijah’s annual check-up. I hope it helps others, and provides some insight into our world.

Every year for the rest of Elijah’s life will see him having to have an annual check up to monitor his heart. To check he is gaining weight, he is growing well, thriving and his heart is functioning. The things they look for now are if his murmurs are the same, if the regurgitating leak has worsened, the valve is bearing up and that they can see good blood flow.

The surgery Elijah had back in 2015 replaced one valve completely and in time this is likely to be replaced again, hence the annual checks. They do not get any easier and currently, my anxiety is at an all time high thanks to post-natal depression, so I was even more nervous about today. I knew I had to swallow this, and not show how terrified I really was to keep Elijah happy.

I was also worried as Elijah does not like people doing things to him, haircuts, dentist etc. They are all a battle but I found when I spoke about what was going to happen, and that it was just me and him he was calmer and more compliable. So, we had some luck with the dentist, I managed to bribe our way through the flu vaccination this year, but the hair cut was a complete disaster. Flashbacks to last year where Elijah hysterically screamed the whole way through the heart scan came flooding back.

We are honest with Elijah now he is of an age to ask questions. Why does he need to go to hospital? What will the Doctors do? We have told him the truth and said he has a special heart, that he had to have an operation and the Doctors must check up on him. For the last two months I had been talking about exactly what was going to happen, in what order, where we had to go, each stage so he knew exactly what to expect. I was going on my own as this seems to make him a lot calmer and a trip to the toy shop was promised. We had practised getting weighed and measured, and even being scanned, fingers crossed we would be okay.

If you do not have a child that has a life long condition, and the hospital is not your usual stomping ground things can be terrifying. However, after 3 years and two hospital stays, and a couple of admissions we have come to be some what of experts in the field and, so we find ourselves very happily being a point of reference to friends and family who may have found themselves with a referral.

I wanted to blog about our appointment today, and capture it for not just for people to see what is it can be like, but to put others at ease, and for Elijah to look back on as a positive experience that he does not need to worry about. I wanted to show you a glimpse into what it is really like to have a child with TOF.

 

It all started with a bus ride, luckily Elijah loves the bus and Fireman Sam and sausages also accompanied us. For anyone who has travelled with a toddler will know that at this point I barely had time to think of the impending appointment in the mist of wrangling a bundle of energy to the back seat!

The cheeky smile

 

Fireman Sam came too!

 

We arrived and so had the rain! Elijah was very excited to get to the café!

At the NNUH



Posing as usual!

Coffee and cake before we go in!

 

I have to admit when I look at this picture I am reminded of when it really began to hit me. The tightening in my stomach, the fear. But, I promised I would stay calm, stay in control and be there for Elijah. Luckily, someone decided it was the perfect time for a poo so I was well distracted for a while!

Arriving in the waiting room and of course Elijah is drawn to all the toys and books! I was very nervous at this point but the fact I was on my own I knew I had to be calm for Elijah to not freak him out.

Loving Miffy.

Lego time.

 

Then comes us getting called in to be weighed and measured, we would see if all of the talking and practicing would pay off, and thank god it did. Where as a year or so ago would see us having to actually wrestle Elijah to have his obs and measurements done this time he didn't even waiver. He did exactly as the nurses asked him too, as Mummy was to busy getting photos for the blog!

Loving the 'magic chair'.

Practice paid off.

I wasn't sure at this point how long we would be waiting for the consultant and decided to keep busy by sending Greg lots of photos as Elijah was playing. Before I had time to dwell on anything we were called in. I was a tad nervous and it wasn't just Elijah's normal consultant that we had but also 3 medical students and I could feel Elijah become a tad more cautious. But never the less he hopped on the chair next to me and was soon chatting away to them all and he let each of them listen to his chest.

It's always a strange feeling when a medical professional gets excited because of the condition your son has, but Elijah was amazing and listened and did everything. I also surprised myself when I could actually follow there conversation due to my excessive reading and even answered some of the questions correctly!

Small talk and catch ups aside now it was time for why we were really there, the heart scan. Even when he was a baby we have never been able to have a calm scan but Elijah (and Fireman Sam) just got on with it. He enjoyed watching his heart on the screen and got very excited when we could listen to it!

Watching his heart on screen

Having his scan

 

Things were wrapped up, and everyone in the room seemed satisfied that Elijah was bearing up very well. I asked a few questions and we discussed that at some point when Elijah is old enough to have an MRI without aesthetic (normally around 10) any future surgeries will be assessed for the replacement valve but for now, we are discharged not just for 12 months, but for 18!

I basically skipped out, handed our letter in to reception and we went to head straight to the toy shop!

Elijah with his reward treat (with Tilly cat).

 

I am not sure if talking about it to the point of exhaustion or bribing him with the promise of the toy shop was the right thing to do. But, we had a positive experience with great outcome and that is all I can ask for right now.