The Weakness and the Strength

Nico is in hospital... again... but this time a planned stay. You'd think that would be better; it's not. He is back to his worst and there is not a damn thing anyone can do about it it seems. So why am I on the laptop writing this post or this on to Brooklyn instead of soothing him? Same reason anyone visits a psychologist. Therapy.

His PEG is in, the procedure (which is not classed as surgery) went well but it seems that Nico's immune system must be weak because all signs point to infection. Screaming pretty much constantly, not sleeping more than 30 minutes, temperature of 38-39.7 for over 24 hours despite panadol... and several other pain relievers. He is flailing around, back on oxygen as a precaution, on IV antibiotics. Nurses see traits of seizures in his behaviour but the neurologist hasn't been in yet. He has been told all that Nico does in the past and is confident they are not seizures but I want him to see for himself and then tell me. If they are, from what I can see he only does this when there is something wrong, like infection... which may explain why 2 x EEGs have come back clear. Or maybe it is just his body's reaction to pain/ infection/ frustration and is not seizures at all

I can't put into words what I am feeling. But I will try.

Drained.
Done.
Heartbroken.
Ready to Run.
Helpless.
Pretty Effing angry at the world.

I just look at his gorgeous face and the last 16 months goes through my head and it is all so wrong. Half his life in hospital. 4 operations if you include this, 6 times under general anaesthetic, 6 further hospital admissions. How can this be right???

For a boy so weak, I haven't met one stronger. I know there are kids and parents in worse situations and am grateful it's not any worse, but he is my hero.

PS If you are wondering what a PEG is, it looks like this but don't look if you don't like medical stuff. Nico's doesn't have all the tape on and actualy looks a lot better but it gives you an idea.