I feel like a pigeon is driving our bus today. I feel like no one knows what is going on and there is just simply no one to ask. Lil had her little flare last week, if you can call it little, as most of you already know. Running fevers between 102.5 and 104.5 for a week is not what some people would call little. Most of the time they were up in the 104 range. The big question is: did she have any lesions? The answer these days is that I don't know because now this horrid disease has decided to start attacking tissue on the inside of her body instead of the outside. For many reasons Dr. R and I believe this recent spell was disease activity and not an illness. She was showing so many signs of her disease activity like vomiting before bed, small pustules popping up, fevers with no other illness symptoms, no one else in the house was sick or got sick, the list goes on. Also she has started making that grunting noise in her throat that tells us the lesion in her airway may be back. I cannot for the life of me get her to take a steroid. We tried everything under the sun. She can even swallow pills and she will not do it. We had a bag packed for the hospital and Dr. R had a bed waiting for us when the fever finally broke. If it were not for that amazing man we would have been inpatient a thousand times over, any other kid would have been inpatient with those temps, but we try to keep her out of the hospital at all costs and we were able to once again. It was close this time though...very close. And boy does it take a toll on me. Playing nursemaid to a four year old is no easy feat.
I always tell Dr. R that when I have his attention, that is when I get worried. I like when it takes him a couple of hours to return my emails. That means we are not a top priority. Lately he has been answering me within minutes. I don't like that. It means we are a top priority. It means he is worried about her and when he worries I worry because if he is worried that means there is something to be worried about. Today's response was that he was consulting with rheumatology and they think we should increase her Humira again. We just increased the Methotrexate and we increased the Humira in the fall.
It just feels like we are going in the wrong direction. Aren't we supposed to be in a place at some point where we can take her off these meds? The other 17 babies who had PG were on one biologic (if that), short term, went off it and that was it. Why is she different? What does this mean for her future? She is only 4. And I always go back to what the risks are of suppressing her immune system long term.
I would love to say that we have to keep increasing because she is growing but I know how much weight she has lost recently. I just wish there were some other cases we could compare her to, someone we could consult... someone who was living this same life. But of course I am glad no other child is going through this at the same time.
This long term worry thing is tough. There is just no end to it. It never goes away. It is the same worry day in and day out and it is such a big worry. The worry being will she get cancer? Will she get start to get lesions on her skin that eat away her flesh? Are there lesions eating away her flesh right now that I cannot see? Are we making the right decisions? How much pain is she in right now? What should I do about it? Should I do anything about it? It is every day, all day long. And there is just no end in sight. And she is just so little.
I don't want to complain. Life could be so much worse. I have my baby, she is home and not living in the hospital. She runs, she plays (as much as she can), and she does so much more. As I always tell people who say to me, "I don't know how you do it." we each have our own reality and they all are hard in their own way but they are also beautiful in their own way. Right now I am working on holding onto the beauty.
