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Comments
@Callum
Thank you.
To be fair my cardiologist has contacted me and believes I may potentially have POTS or a different condition affecting my heart, or maybe even POTS and another condition. He is going to have me wear a heart monitor again for a short while and book some other tests.
@Animalloverb That sounds difficult to maybe have POTS and have to wear a heart monitor for while. Good that you're getting some professional support though. How do you feel about that?
@Callum
I'm not feeling great about it but I sort of need the correct diagnosis so I can get help to live with whatever it may be. I have been prescribed a medication to take and it has helped with some symptoms, they are leading towards more of a different condition that affects my heart rather then POTS but they also think I could have both. So for now I'm on medication to ease symptoms and avoid risk of heart attacks.
@Animalloverb It makes sense you feel like the diagnosis will help you to live with it, it's a positive way to look at the situation. It also helps you to get the right support for the condition, as you mentioned with having prescribed medication. I can imagine it's overwhelming to have this happening, but glad to hear it's being managed appropriately!
@Callum
It is rather overwhelming, it's also really difficult to fit the appointments into my schedule, the nurse for my son only comes on weekdays not weekends. And once i have all his diagnoses and plans and he has the right medication then we won't meet the criteria for a nurse anymore. But as I say, when we get the all clear about his cancer and his immune system picks up then I can get him into nursery and he will he in school as he gets older.
I sort of want to keep him at home until he is on the right medication and we have plans and diagnoses. Because without those, mainstream places won't accept him. Obviously if my Son needs SEND education I will happily have him go to one, but I would rather have him try mainstream and see how he gets on with everything.
So it will he hard to find childcare to attend my appointments, so my son will have to come with me.
I am having a heart monitor next week for the whole week, I already did have one before but my cardiologist wants me to have yet another one just to try and capture everything. I am also going to be having heart scans and other tests. So it is a lot, and it is rather stressful aswell.
@Animalloverb It must be so stressful trying to fit in the appointments for this diagnosis around caring for your son, it makes sense that would feel overwhelming for you to be dealing with. Hopefully he will be okay to attend nursery and school soon to help reduce some of that stress. How would that feel?
It also makes sense you want to keep him at home until he is on the right medication, he deserves to be safe and he is the safest with you. You are so strong for considering SEND education for him but also wanting to try him out in a mainstream school first to see how he adapts.
You are doing a brilliant job juggling everything so far, it must be tough with finding it difficult to find childcare so you can attend these appointments, especially with having a heart monitor amongst other scans and tests. You are so strong with sharing all of this with us.
@Callum
I really appreciate it. I tend to find it difficult to talk here as it is sort of public if you get what I mean.
I have mixed feelings about it to be honest. It will be a new milestone but also hard to trust my son to be cared for properly with people I don't really know. It's hard leaving a child in the care of someone else. But I have time yet, I will try and find somewhere that works for us both when that time comes.
It is difficult, heart monitors are irritating and I don't do well in hospital environments due to a reason from someone I love.
@Animalloverb It can be so overwhelming talking on here with it being public, you're so strong for doing that. It makes sense you're unsure about whether your son will be cared for properly, he deserves the best care at school. Trying to find somewhere that works for both of you when the time comes sounds like a good plan for the time being. It sounds like you have your own health to worry about first, and it's normal to feel uneasy in hospital environments, they're not the best places to feel at ease. You're doing a brilliant job juggling so much and still being there to care for your son.