And then she was ill--updated

It was February when she became ill. She had a fever, and instinct said to not wait but to take her in. The whirl of activity--the doctor listening to her chest for too long...the nurse hooking her up to an O2 sat sensor...the doctor sending us off for xrays...the radiologist and pulmonologist checking her in the protesting I was sure she hadn't swallowed something...a terrified call to N....driving back to our doctor...

...where we found out her heart was on the right side of her chest and something very large was where her left lung ought to have been. That terrible weekend of waiting to see if antibiotics would take down the fever and clear out infection...Monday, watching our doctor pick up the telephone calling for a surgical consult.

...and then finding ourselves in the nightmare of watching our child being rushed from the CT room to the OR, on a stretcher, while being bagged....and receiving the news that Lou had a congenital cystic adematoid malformation (a CCAM cyst) and that she would die without an operation...and could die while in the operation.

Updated to add--Lou is OK now. She pulled through it all (but it's a long story). I just want to make sure readers know that this is not happening now. I am telling her story for the first time which is turning out to be a very healing thing to do.

Poppy & Mei  – (February 11, 2008 at 8:31 AM)  

Oh my god.
My thoughts & love are with you!
It will be OK. It will...Xxx

Tara  – (February 11, 2008 at 8:39 AM)  

My own heart is thumping as I finish reading this...

Henitsirk  – (February 11, 2008 at 8:54 AM)  

How horrible that weekend of waiting must have been. I remember at my son's birth being told that one procedure might save his life, but that it also had potentially life-threatening or permanently disabling side effects. We did it, and it did save him. By that time, I trusted my instincts much I see you did with Lou.

maymomvt (or Sarah)  – (February 11, 2008 at 9:19 AM)  

I don't know if I trusted my instincts as well as I might. This story goes on...and the questioning of our decisions definitely began--especially as the doctors themselves began to begin searching for the right cure. Should we go to Boston Children's? Should we call in a different specialist? Are we being strong enough advocates for our child? What are we doing to our other child?????

Dawn  – (February 11, 2008 at 10:38 AM)  

I'm so glad to know this has a happy ending. This sounds like the scariest experience for your family. I'm so sorry you had to go through this.

Anonymous –   – (February 11, 2008 at 2:37 PM)  

Wow. I can absolutely imagine the terror. Thank god she is okay now.

Tracy  – (February 11, 2008 at 4:11 PM)  

How old was she at this time? One year?

shelleycaskey  – (February 12, 2008 at 2:43 AM)  

wow, every parent's nightmare. i'm so happy that obviously things turned out okay! but in the middle of it...all of the questioning and fear you must have experienced! i can only imagine! i'm so happy you can share your story now and let the healing begin. :)

Catherine  – (November 15, 2009 at 9:45 AM)  

I am so sorry for your struggles as a family--what a valiant fight and a story of great love and faith and community. So happy you are all on the other side now. Bless you all!


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