That's how I feel right now. I'm fighting futilely against a force that is so much bigger, so much more powerful than I am. My daughter's chance at a semi-normal life is slipping further and further away from the safety of the beach and there is nothing I can do. Each time we make progress and the shore is in sight, we are simply pulled under again, further and further away from any hope that things will ever be OK.
Last week was a bad week. A really bad week. It started with sniffles, then wheezing and shortness of breath, low O2 sats, prednisone, inhaled steroids, insane blood sugar, dehydration, chest pain, irregular heart beats, doctor after doctor, the ER, pulmonologists cardiologists and finally a possible diagnosis of AI lung disease. What??
Yes, apparently since your lungs filter the same immune complex filled blood that your kidneys filter, (if you have multiple autoimmunity with kidney disease like Emma does) they have a tendency to become inflamed and unhappy and damaged too. Lovely right? My daughter's immune system is not yet happy with the amount of systemic destruction it has already caused her body. It's pulling her under again and of course, I'm going with her.
I don't want to be totally doom and gloom. We have no definitive answers yet, and it could be that she has just suddenly developed very severe asthma, and that the interstitial inflammation in her x-rays was.... a fluke? That her unexplained heart rate drops with albuterol, (a stimulant), that no one had ever seen before, can be explained. That her unusually low O2 sats and shortness of breath in spite of her "clear" lungs has another answer. I'm trying to be optimistic.
I feel like a broken record here, but this is the worst diagnosis she has ever faced, Again. How this many things can go wrong with one precious little girl is beyond me. When I questioned the pulmonologist about the insanity of these mounting problems she could only say that I would have to take my complaints to "the man upstairs." My complaint has been officially filed...
She, as usual, has been unbelievably brave and tolerant and stoic. She is amazing. With her puffy little prednisone cheeks and tubes and wires everywhere she was a perfect angel. When the vampires came into her room for her 5am blood draw she started to fight, then she looked up in defeat and in her little sad voice said, "if you wont hurt me, I wont move." I think my heart broke into a million pieces, Again. My poor abused, little pin cushion. :(
We will be seeking more elusive answers in the coming weeks. She can not return to school until we really know what's going on, maybe not at all. She really loves school, so this is going to be a difficult adjustment, but we are going to make the best of it. She will begin "home bound" school next week so at least we will have a visitor two days a week. I know she will look forward to that.
I will update you as we learn more, and I hope that we have some good news in the coming weeks. Until then, feel free to share your concerns with the man upstairs and keep us in your thoughts and prayers. We could really use a life raft about now.