A week ago I was sat at work, with a 4yr old son at home poorly with Daddy, I never expected what was going to happen over the next 24 hours. One of the scariest days in years and for me to say that with our everyday’s is no small feat.
Friday morning Grayson was still so unwell, thankfully Mr Innocent Charmer made the decision he really needed to see the doctor, Grayson has a weakened immune system, that is part of his disabilities, as well as an inability to really cough as he is too weak, he gets poorly alot, if I took him to the doctors and put him on antibiotics every time it would be 3 out of 4 weeks. We as parents have learnt his patterns, how he responds, we know how to syringe fluids into him even if he is asleep to keep him going. Now I don’t believe any of that, for the first time in 3 years with Grayson I doubt if I am a good enough parent, here is why….
As I said Mr Innocent Charmer took Grayson to the GP for a 10.20am appointment, we thought maybe some antibiotics and home, but at 10.30am I received a phone call saying he was on his way to hospital as they wanted a chest X-ray, I was anxious but still not panicking, it was a new GP to Grayson and he was being cautious. Then I had the text that made me sob, “Just been X-rayed & taken result straight to paeds to let me know if we can come home or be admitted x” – I knew right then something was wrong, they wouldn’t see Paeds if not, within 20 mins Grayson was on a day ward on Oxygen and nebulizer, he had barely any breath sounds from his right lung ad there was a large dark patch on his X-ray, I had no idea what this meant but I knew it was not good.
It didn’t get easier as I was home with a poorly Deacon who was due to see a doctor an hour later and I had no car, thankfully my family came to our aid, I got Deacon checked in the same hospital Grayson currently was and then I went to my baby, I could not believe how poorly he looked, he could not wake up and was on Oxygen with no fight (he hats things touching him due to sensory issues). We then found out Grayson was going to be ambulanced to the main hospital 40 mins away, so Ash took Deacon home and collected our bags as this would be an overnight stay for sure.
Grayson then deteriorated a little, ended up with pushed fluids and meds, they made the decision he needed to be blue lighted to the new hospital, still at this point I don’t think I thought it was anymore than an infection.
The doctor saw us quickly at the next hospital, we were quickly explained that it was suspected to be Pneumonia and he was very unwell, it was when the doctor said to us ICU have a bed ready but we shall try and keep him here, it is unlikely he will make the night here though, they then added it was lucky they caught it when they did, another 24hrs and who knows. As soon as the doctor went away I fell apart, this doesn’t happen often and usually only with Ashley, he of course as always on the outside was a temple of strength, my saviour, dismissing any notion this was my fault. But I had allowed my baby to get to this point, I had said no to taking him to the doctors days before. I would have allowed it to get to the point where he may not be with us anymore.
I spent all night awake watching him, his breathing dipping dangerously low even with full high dose oxygen, I changed his monitors, gave him his oral meds, helped as they pushed more antiobiotics than any little system should take, I cradled him when he finally came to and made sure he knew I was there and as midnight struck I kissed him and thanked him repeatedly for fighting and surviving 5 very long years.
Yes my baby spent his 5th Birthday on a hospital ward on Oxygen, to be honest this is his 2nd birthday he has woken in hospital and his 4th where he has been too unwell to even wake up. How is that fair ? But it doesn’t matter as my superstar like the Queen as of this year will celebrate 2 Birthday’s, his unofficial shall be April 4th and hopefully he will have kick ass parties and not cannulas in his arm.
I am struggling with what has happened, I haven’t been able to let him go back to school yet, he is probably ready but I am not, I am terrified his lung is still weak, the school has many children with infections and one to him could be life threatening, I know I will have to send him back next week and that this reasoning is my own guilt.
I am sorry my baby you spent another Birthday unwell, but at least we spent it together, to be honest you love alone time away from your siblings so that would have pleased you.
You are the bravest and most courageous little boy I have ever known, you should never have to live the life you do but never forget that Daddy and I will always give you everything you need to be happy.
This past year you have amazed us, a year ago they never thought you would stand let alone take steps, well certainly not for many years, but in March you decided that standing tall looked fun and by May you were taking little steps with aid. Since then last month you took 2 accidental steps with nothing, I in my heart knew this day would come, no-one fights like you do.
We had full confirmation last month you are totally “unique” and no other child in the UK matches up to you, that was a hard day but honestly I knew that and let’s be honest better to be unique then a lamb.
I love you know and forever, my love for you I never knew existed, I really pray that you hear and feel that everyday, I am so sorry I have not been all that you deserve this past year, Mummy promises to try harder and find a new fun life for us all.
This will be our year my baby, you will climb mountains and so will I.
My number 1 baby always.