Sunday, November 28, 2010Life is ever changing. It becomes very hard to get accustomed and develop a routine when what you thought was "normal" yesterday has become a thing of the past twenty-four hour later. We have experienced a rough couple of months. Back at the end of September Kennedy was becoming very irritable, crying non stop, and showing signs of respiratory distress. It appeared like we were in for the long haul. We immediately made an appointment with her Pediatrician and were told based off Kennedy's increased irritability, breath sounds (wheezing and crackling), and green secretions - Pneumonia was a brewing. We were prescribed antibiotics and some inhaled steroids with the hopes we could kick this before it got out of control.
It seemed to take about five days before Kennedy began to feel a little better. I was in shock how fast we were able to get this cleared up - or so I thought! Several days later she took a downward spiral. She was having severe chest retractions (which for a child with no muscle tone is almost impossible to do) and her saturations were holding steady in the low 67-71 range. To put this in perspective, Kennedy's normal resting saturation levels have always been 91-93. I began to panic a little. I made the call to increase her oxygen levels to 1LPM and have her on it around-the-clock.
In the meantime, I called her Pediatrician and we were able to get an appointment that afternoon. Kennedy's secretions had subsided, however, she was visibly struggling to breath, exhibiting constant grunting with every breath, extremely irritable, and looked completely wiped out. We were sent immediately to the lab for a chest x-ray which showed severe left lung atelectasis. Which just means that her alveoli had collapsed, thus allowing for inadequate gas exchange and decreased saturation levels. In addition, her left middle lung showed extreme haziness on the film, so much so that her heart was not visible through her left lung. This was a sign that the pneumonia was not cleared with the first round of antibiotics. We consulted with her doctor several hours later and were prescribed stronger antibiotics, more inhaled steroids, and a decongestant.
We discussed the plan of action should Kennedy take a turn for the worse. It is well known by all of Kennedy's doctors that we are against going back to the hospital. Under no circumstance will we ever admit Kennedy back into the hospital. We have DNR's signed and a pallate of care set forth. My doctor is extremely supportive of our decisions. In addition, if need be he could have a doctor out to our house if the situation progressed further. Kennedy follows the saying, "slow and steady wins the race". It appeared that we did it. Kennedy fought off pneumonia again (oh her poor lungs must look like a 90 year-old chronic smoker with severe emphysema).
Even though Kennedy was able to successfully overcome this bout of Pneumonia it has left its mark. Well actually, I don't know if this last sickness has left her transformed or if her overall disease has progressed more so, and thus, has left her changed forever. It is sad.....Sad to look back and see the little things she had slip away. We have watched the events of yesterday become a thing of the past. The Bonomo family has learned to adjust, to become flexible, to always expect the unexpected, and to arrive at the realization that tomorrow is not a guarantee. We are in constant transformation and at times when we feel like we can not take it any more, we are able to step back and look at our daughter and know that if she is able to wake-up and fight everyday then so can we!!!!!
