Tired and worried

Tomas has taken poor sleeping to a whole new level - no a whole new planet. I'm sure it is the iron bothering him, even though it is going into the J. He is grouchy and tosses and turns and flips and flops and whines and cries all night long. Add to that an extension set that popped off his feeding button because he was flipping around so much causing a huge mess at 3 am and you have two very tired parents and one very exhausted baby.
I'm worried too. His breathing is different, deeper and coarser, but his O2 has been good since that first night. His heartrate is up even while he is sitting in his crib watching VeggieTales (his current fave, and the only thing that consoles him right now). I put him on oxygen today to see if it would help his heartrate; it did - it came down a bit, but not much. His sugar was low this morning, and I checked a urine sample and he had keytones in it. That is not supposed to happen, but I don't understand why no one can put all the pieces together.
We had a snow day today or I probably would have brought him to ER. Not a true emergency, but worried enough that if the weather was good I would have went. Instead I kept the O2 on to buy us until tomorrow when I can call the pedi. Tomas is supposed to see oncology on Thursday, but I don't know if this can wait.
I am so tired of putting bandaids on symptoms without being able to get to the bottom of what is happening. I really hope this week brings some footwork on the part of his doctors. We need some relief!