Not going to update you all on speculations. There are many. When I asked our doctor if they would find it this time the reply was ‘we are not letting you go til we have’. Feels good, reassuring. I cant wait now to find out, I cant wait so that we can help her.
This last pneumonia scared the living daylight out of me…. at one point we had 12, yes twelve doctors in our room, from ICU, pulminology and immunology, all trying to figure out what to do with this tiny weenie little girl who kept going lower and lower with her oxygen levels.
She didn’t speak for 4 days, then on the 5th day small words came. Day 6, finally sentences. Im in bits now. I wasn’t then. I was the calm and collected super mum, always am. After… thats another story. Day 8 we went home. We have enough medications on the dining room table to run a small clinic.
So now what? We wait, we wait for test results on the IGG subclasses (other fancy terms no parent ever should need to learn!), then once we have those we go to Rabka, another hospital in the mountains, but with more advanced diagnostic methods, they may need to see the inside of her lungs (how the hell this happens I have no idea, Im scared to ask).
Then after that, unless we have a 100% diagnosis at that point we are off to Krakow to the immunology hospital there, who have diagnostic tools that they don’t have here.
Whatever is going on with pumpkin pie, its not her celiac. This crap, its something else. No stone will be left unturned, but the belief is that its her immune system, something I have been saying for a couple of years now.
I do believe everything happens for a reason, and if this is what we have been sent to deal with then so be it. We need to try to make the best of it and do the best we can to make life as “normal” as we can, for celiac kid, but also big brother who always ends up coming second.
And no matter what we are going through, there are always people who have it far far worse. Complaining wont help.
We are still lucky. We could be the far far worse people….