Friday, January 11, 2013

Smack dab in the Middle of PLAN B

Everything did not prove to be ok with Parson.  She continued to struggle to breathe.  Rodney and I kept saying "something is not right."  We made another appointment with the pediatrician to get things checked out.  He agreed that she was working very hard to breathe.  After a few more trips to see Dr. Fidone he wanted us to go to Texas Children's Hospital in Houston to see a pulmonologist ASAP.  We got an appointment the next day.  We saw the pulmonologist and he treated her as though she had asthma but didn't make an official diagnosis due to her age.  Her condition continued to deteriorate until we landed at Dr. Fidone's office on September 27th when he contacted Texas Children's and sent us directly to the ER.  When we arrived at the ER, Parson was in significant respiratory distress.  No time for paperwork or introductions, Franchelle the nurse took us straight to Trauma Room A.  After several days, many doctors, many tests, ICU, intubation,  MRIs, cat scans, and surgery for a lung biopsy --the doctors told us on October 2nd that they believed Parson had a genetic mutation related to filamin A that caused periventricular nodular heterotopia.    Hold up, we came in on the 27th with a cough and now this.....This is where we landed smack dab in the middle of PLAN B.

Parson remained in the hospital for 12 days.  During this time, we learned a lot in a short period of time.  We learned all about lungs, genetics, filamin A, PVNH, and met Dr. George Mallory.  He introduced himself and said we would be spending a great deal of time together and explained that he was head of the lung transplant team at Texas Children's. What?  <Insert BOMB being dropped here.> He explained that they had treated 4 other kids with the same rare condition as Parson.  She would be their 5th child with PVNH and lung disease and would ultimately require a lung transplant.   Dr. Mallory introduced us to the first of those 4 children and her mother.  She was now a delightful 8 year old girl who received her transplant at 18 months old.  She and Darby played together in the ICU waiting area while Rodney and I visited with her mother. 

Parson was discharged with supplemental oxygen and we headed home for the "new normal".  She could not attend church, go to daycare or be around kids to any extent.  Her weakened condition meant that germs, viruses, flu and colds were the enemy.  Her lungs were not strong enough to withstand illness, so proper hand washing and sanitizer became our new best friends.  It was decided that Parson would need to receive synagis, an antibody injection, every 28 to protect her through cold/flu season. 

Six weeks later, we were back at Texas Children's with pneumonia.  This time we only stayed 3 days, as the hospital was chocked full of kiddos with RSV.  We were in a pod with 2 other kiddos with RSV and the docs agreed Parson could not be exposed.  They determined that it was too dangerous for her weakened respiratory condition and we were released.

A week later, Parson's pneumonia was back and worse this time. Dr. Fidone and  Dr. Mallory agreed on her treatment and Parson was treated by Dr. Fidone in Lufkin.  She was prescribed 3 different antibiotics and we received IV antibiotics for 2 days in the clinic.  This course of treatment kept her well through Thanksgiving and Christmas. 

I can honestly say that even in the absolute shock of Plan B, there was no doubt that God had his hand on every step, decision, doctor as well as Parson and our family.  Our support system has been amazing.  Our doctors, family, friends, and complete strangers have proven God's faithfulness to us over and over.  Somehow in the midst of this "new normal" of PLAN B we felt an amazing peace. 

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