Picnic

You know the camp song "I'm goin' on a picnic..."? In it, you say that line and then each person states a food or picnic item they will bring beginning with a letter of the alphabet.
Today I have had the tune in my head, except the words go "I'm goin' on a picnic... and I am bringing a (B) Blanket! and a(P) Pillow!" That's it. No food, noone who talks, just something to sleep with.

Since going to the pediatrician every 5 days has become our new normal, why would today be any different? We made another unscheduled visit to the office because Liz has had a weird rash on her palms since Sunday. It is itchy at times and burns. The GI doc thought that it looked viral when he saw it on Monday. It has spread a bit, and given her history of infections, staph, and immune system issues, we were told to bring her in. Poor kid, I have had her wearing little mittens when she handles the phone or remotes because I do not have time or patience for us all to get some contagious, itchy rash. The pediatrician does not think it is contagious, so the mittens have been put away. Can life get any more ridiculous?!
It can, actually.

Today, when weighed on the same scale used just five days ago at the pediatrician's office, Liz weighed in three pounds less. She has lost 3lbs in just five days! So, now everyone is concerned even more than they were last week.
Now that we know her kidneys can handle extra protein intake, she will start on a supplement to boost protein and calories to her diet. We'll try this for a bit, and pray she gains weight, because if she doesn't, we'll have to get more drastic medically in how we try to help her gain. SO frustrating and scary, actually.
And if that wasn't upsetting enough, her labs from Monday show that her liver function labs are off. Her GI called me tonight to talk to me about the results and though he is concerned, he is recommending we wait ten days and repeat the labs before we start doing additional liver studies, given that this is her first time having abnormal liver labs. Her white count dropped pretty dramatically since a week ago, so he is thinking her body may be fighting a virus and this can effect the liver. Blah, blah, blah.
I will admit that seeing the liver numbers and then hearing him say he is concerned made me feel like I was going to throw up and I wanted to run, literally. Come on, now her liver?! I have a panicked feeling about this, more than some other things I have heard.

Labs also confirm that her nutritional values are low as well as her metabolic labs. Like I said, her white count and neutrophil count have dropped again, so she is immunosuppressed right now. Her plateltes have also declined, but this isn't surprising as we know from labs done in November that her body actually attacks her own platelets.

I talked with her Ped. today about getting her back to school. My goal had been February-ish, but her doctor wants her out until at least March, so there you have it.

It all sounds like one big mess, doesn't it? I feel like things are escalating and it is really upsetting. Tomorrow I will talk to Hem/Onc and my Pediatrician will help me decide what to do next. I would bet a lot of money that she will be admitted in the next week for fluids, nutrition and studies....but I am praying she isn't.
I don't have time for that. After all, I am going on a picnic.