Phoebe continues to still lose weight despite eating as much as she is. We took her in for a weight checks each week since the beginning of the month, and each time she steps on the scale she shows at least a 1 lb weight loss. To date, she has lost a total of 5 lbs. Because of this continuous loss the doctors drew blood to run a bunch of labs.
Her labs....as confusing as ever. She has some levels that are high and some that are very high. She also has some levels that have been low her entire life but are now in range. Collectively her team of doctors don't know what to make of these values and changes. What they all can agree on is that if you were to look at individual levels they point to specific diseases. But combining these levels to be read as a whole, she remains a medical mystery. This could be her immune disorder, or it could be something else. But with these individual lab results coupled with the weight loss, this cannot be ignored. So they want us to go back to the doctors office where this all began 4 years ago...The Valerie Fund.
We go to the Valerie Fund on Thursday, to see Dr Halpern. It's been a little more than a year since we have seen him in person. That seems to be the never ending pattern. We never go longer than this before something pops up sending us back to him. It was slightly comforting but equally heart breaking to hear "How is Phoebe?! We miss her but I was hoping we wouldn't hear from you to make an appointment" when I called to schedule her visit. Over the four years with the Valerie Fund we have grown close with the staff, as I am sure each parent who brings their child there does. It was a collective unspoken heartbreak that we were there again, no closer to answers, but being fully aware of her history and the great risks it carries.
On Friday, we go to Phoebe's pulmonologist. We scheduled this appointment in September for two purposes. 1) We had changed her inhalers in September, and they wanted to give her 3 months to see if there was any improvement in her symptoms. 2) We were to have a repeat CT and compare it to the images from the NIH to check the size of the tracheal node and see if the atelectasis improved, worsened or has remained the same. The CT was to take place on Sunday morning. Key word...was.
Since the original CT was done at the NIH, insurance was not involved. The NIH is government funded and they do not go through insurance at all. When we first saw her pulmonologist here in NJ he ordered an X-ray to see if we could see what the CT showed, hoping that would eliminate her needing the repeat CT (less exposure with an X-ray than a CT, and they didn't want to do another CT if we could see it on an X-ray). Well, this bit us. Because the X-ray was done through insurance, and true to Phoebe didn't show us anything, we got the call Friday morning that insurance was denying the CT.
Insurance feels the CT is unnecessary since there were no findings on the X-ray. The office tried to quickly calm me by telling me the doctor was appealing this decision and immediately requesting a peer to peer, it will just take time to hopefully have it approved. We are keeping our appointment on Friday to regroup regarding her inhalers and have a face to face discussion about the next step in appealing insurances denial.
So there I was, Black Friday shopping, crying about insurances decision. Heart broken that the inhalers have not substantially helped, knowing all this time at least part of her lung shows collapse, knowing she is fighting a cold and developing a bad cough because of it. Insurance can look at her entire medical record (we have had the same company since she became ill) and still deny necessities.
But as I was falling apart, something caught my attention. The song playing at the store I was in. ..."Fight Song". It was the reminder that I needed at that exact moment in time. We have fought every step of the way for the past four years. Though we don't want to be, we are used to this fight.