Soraya is getting her heart monitor fitted today. It is more a formality and I think we are already prepared that it is not going to show the issue.
Soraya, came to us a while ago and said her heart hurt, it has happened a few times since then too. When I have put my hand on her chest her heart beats so fast and you can feel it almost pounding out of her chest. Children’s heart rates are quicker than adults anyway but you would have to experience this to know it is not right.
Mark and SVT
Luckily we know that there is a possibility it could be similar to Mark’s heart condition, I say luckily as it just takes some of the fear and panic away. Mark had SVT which is Supraventricular tachycardia (and no, I cannot pronounce it!). Mark had some of the muscle from his heart burnt off when he was 15 to help the condition. Although even now sometimes his heart stops and then beats erratically trying to reset itself.
Soraya had her heart scanned which she found super cool.
The doctor explains that Marks condition can be hereditary and he also showed that it is likely that with Soraya both heart valves remain of one being open and the other closed. He was amazing at going through everything with me and I have to say I appreciated it so much. We may beed to purchase a KardiaMobile from Alivecor so that we will be able to get the results as soon as an episode happens as by the time she notifies us, we try to get to hospital and get her seen to and hooked up the episode will be over and we will be back to square one.
Lavender and Bunny
Soraya was such a superstar although I could tell she was trying to play down how nervous she was. She really is such a ray of light and positivity and is so fun to be around. She took Lavender and Bunny with her and I know it may sound crazy to some but they really did help her to feel more secure.
I Look Like a Robot
Before Soraya was hooked up to the portable heat monitor she needed to be hooked up to a different machine which is a 12 lead ECG. Once all the wires were placed she said ‘ Hey, Mumma I look like a Robot’ she thought that was great fun (until the took them off and the sticky bits hurt :-/)
I loved how she just took it all in her stride and the nurses were amazing at each step. They helped explain to Soraya and myself what was happening and why.
The only issue we had was the incredibly long wait. after we had the initial results which we then went to take back to the doctors. We entertained ourselves with eye spy, counting games etc…
Claudencia
When we were the last ones in the waiting room the nurse came back to us. Turns out we just needed to pass them the report and didn’t need to wait all that time all along! But as Soraya was so awesome the Nurse gave Soraya a new Teddy Bear. Soraya was so happy and she loved the gift she maned it after the nurse so meet Claudencia
Once again I am extremely grateful to the Nhs and all they have done to support Soraya and in what could be a very scary experience for a 5 year old she came away beaming.
