Phoebe’s middle lobe of her right lung is susceptible to collapsing. Middle lobe syndrome (as it is called) is common in patients who have a history of hyperplasia...which Phoebe has (every lymph node biopsy has come back as hyperplasia). Hyperplasia is when there is an increase in the number of cells in an organ or tissue due to cell proliferation (multiplying)...why Phoebe’s lymph nodes are so large.
Phoebe is at risk of the middle lobe collapsing randomly because she has hyperplasia, but she is highly susceptible to it happening when she is sick. And she has a tell tale sign that we are able to see when she is experiencing her middle lobe starting to go down. When she goes to take a breath she arches her back and takes a giant breath in, doing everything in her power to get the oxygen she needs into her lungs.
The scary part of this (aside from watching her take breaths like that) is when she is not displaying any symptoms of being sick and starts to breathe like that. It’s times like that, like today, when we do not know if it is happening because of the hyperplasia or if it is happening because she is sick and just hasn’t started to show symptoms.
And with her immune system being what it is, we are now in a battle to try to keep her home and out of the hospital. Her doctors share our concerns and cautions about sending her to the emergency room when things start to go like this with her. Exposing her to the germs in the ER and the inpatient unit (if they admitted her) increases her risk of respiratory distress and failure.
If you watched Phoebe get off her bus at 3:20 this afternoon, you would have never guessed that this would be the turn of events we would experience this evening.
So for now, we are administering frequent breathing treatments with constant monitoring until we can get to the doctor first thing in the morning, praying more unpredictable events do not happen in these wee hours of the morning.
#12DaysofRareChristmas