Cystic Fibrosis Remains Unpredictable

This last week has taught me not to count my chickens before they hatch, so to speak...after just two weeks of being home and arriving from hospital so well, Niqi picked up a cold which quickly developed into her not being well at all.  It is my own fault for being so happy and daring to dream that she will continue to go from strength to strength, to the point that I imagined she may not even need to have a lung transplant.

I know that it may sound silly, but every now and then there are fleeting moments when I feel guilty that she has improved so much and then suddenly I am brought back to reality and the battle continues.  Cystic Fibrosis has stolen so much from our lives, it has become the number one 'thing' that has just taken over.  Obviously the person suffering is the one most affected, but every other member of the family becomes just as overwhelmed by the roller coaster between well and sick on an emotional level, that they are the ones who have to put their lives back together right at the end....they are the ones who have to find 'normality' after so many years of living in limbo.

So after a week of sleeping most of the time, forcing herself to eat, coughing throughout the night and battling to breathe, NiQi is now on the mend again.  The oxygen bottle that had been removed from the car the last few weeks has once again been put behind the front seats...just in case she needs to use it when we go out anywhere.  Shakes are being made up and consumed at an alarming rate to try and keep the weight up.  Gasps of deep breathing are sucked in to get as much medication as far down into her lungs as possible when doing her nebulizations, which most times ends up in coughing fits, causing headaches.  Physiotherapy has once again become a chore leaving her exhausted.

We managed a trip to the supermarket on Saturday, where we bumped into a fellow CFer....NiQi didn't want to hug her because she wasn't wearing a mask and she knew she wasn't 100%, but she was so excited to see NiQi that she couldn't help it.  NiQi turned her head away and held her breath, not wanting to breathe all over her.  Hopefully she kept her germs to herself....

So she starts all over again, working hard to reach the point that she was a few weeks ago, then she can aim to improve even more.  For now we are happy that she is doing well again, grateful once more for God's graciousness in her life, happy to look ahead again to a future and a long life....