My son was born October 2019. No problems at birth, born at 37 weeks gestation at 7lb 13 so a good strong healthy weight - if he'd gone to full term he could have been 10lb.
He was breastfed almost exclusively until August 2020 when I began to wean him off - I wanted to give his immune system the best chance.
In September 2020 he developed a severe infection that was suspected as some kind of blood infection. Some strong antibiotics and in a couple of weeks he seemed completely fine. Then between September and November he had a number of smaller infections, rashes, high temps etc but nothing requiring admission.
Then in November 2020 he became very ill, and this was the beginning of my 'bad feeling'. He was admitted for a week on IV antibiotics and his temperature was near impossible to bring below 40 celsius. No particular chest type symptoms although they did a Chest X-Ray as he was having mucusy nosebleeds which showed evidence of 'chest infection'. One doctor in A&E could hear a noise on his lower right lung, although no other doctor seemed to be able to find it. They did viral swabs and found evidence of Adenovirus and Rhinovirus - althought they said to us that they have no idea why he was so poorly from just this. I queried whether he is possibly immunocompromised, but it was shrugged off and told to 'see how he gets on'. He recovered from this illness completely and we had almost a week where he was the picture of health - as far as we were concerned considering his state since September.
At the end of November 2020 he started with a cough and I could hear his breathing be quite wheezy. No temperature. Took him back to the GP who diagnosed chest infection as she could hear a noise on his lower right lung (same place as A&E doctor - but seemingly more significant). A course of antibiotics but no improvement. Continued to take him back to the GP, but they just kept fobbing me off with 'well kids get ill, and he has no temperature and is generally well so be grateful' in a nutshell.
We then get a call from the Pediatric Consultant from the hospital at the very beginning of January 2021 as a follow up to his November admission. I say he isn't well and quite frankly I'd like something done about it as I've been ignored since it started in November. While he is generally 'well' in that he plays and laughs, compared to other children his age, he is simply not the same. He doesn't eat anywhere near enough, he can be incredibly lethargic and has a lot of 'off' days where he seems to be in pain we can't locate and he just wants to lay on the sofa, as well as his communicative development being slow. He was put on a 2 week course of Co-Amoxiclav (strong antibiotics), weighed and measured (he has gained since last measurements, although has dropped a full centile and needs monitoring), ordered an X-Ray and given a follow up consultation. The X-Ray shows shadows on his right lung - which was said to be a 'bacterial infection' despite antibiotics making no difference whatsoever. No improvement so he was referred to a specialist children's hospital but was told it may be 4-6 weeks until he was seen. I raised a concern that I had started to see blood on his cot sheets when I woke him up in a morning - but was told it was most likely nosebleeds so 'not to worry'.
I started noticing watery blood on his sheets and comforter more often, but there was no blood on him and it was just a couple of spots. Then last week he had a large coughing fit and coughed a large amount of bloody mucus. He has since coughed blood every day since, and regularly cries out in pain. I took him to A&E at the specialist children's hospital who were shocked he has been left this long. They said they don't believe it is an infection at all but 'wouldn't like to make guesses at this point' and was given an urgent referral to outpatients that they said should have given us an appointment within 48 hours. I phoned up as I hadn't heard anything and they forgot to make the referral. We now have a video appointment for the 1st March, which I said wasn't good enough, although they have nothing sooner.
I'm honestly terrified. I think any parent's logical conclusion would be to assume cancer when there are undiagnosed shadows on their lung, a noise and coughing blood. Although I still feel stupid for even considering this is an option and I hate jumping to conclusions - I just can't seem to find any viable alternatives and I feel so let down by his healthcare providers.
Is it normal that the appointments when it is suspected aren't extremely quick? Is there anything I can do to get him seen sooner? Am I being completely paranoid? How did you cope waiting for assessments and tests? Every hour feels like a year and the not knowing is unbearable.