Oh Mike....I’ve pinged Logan’s and trussell’s prayer warriors...to pray for your wife....
Please keep this thread updated and know that these are mighty fine people praying for her, and you, and the doctors.
Prayers lifted....
BTTT
I join in earnest prayer for your wife!
Can you ping to the prayer warriors? This is a note from a friend: People have been asking about Spencer and we appreciate all their thoughts. I am sending this message to you to send on to those you think would appreciate knowing. Marlena posted this on Facebook for friends and family and it pretty much explains all that we know.
Spencer 4, was born with Cystic Fibrosis (CF). This rare condition, and iin it’s simpliest explanation, causes the body’s mucas to be thickier than normal. This, in turn, wreaks havoc on several parts/systems. Spencer’s lungs, pancreas and liver do not function normal, but up to this point this has all been successfully treated with medications.
Our primary concern is keeping him free of bugs, viruses and a few bad bacteria. Bacteria that would not affect people who do not have CF can be potentialy life-threatening to those who do have it.
It the scheme of bacteria there are three biggies for Spencer. We have cultured the worst- B. cepacia - Once it enters the body, there are three possible effects and it is not possible to predict which will happen. Sometimes B. cepacia colonizes in the lungs, causes no symptoms, and has no long term effect. Other times B. cepacia colonizes in the lungs and causes damaging lung infections and inflammation that lead to a slow deterioration of lung function. In the worst case scenario, B. cepacia can spread throughout the body causing “cepacia syndrome”, which leads to a rapid deterioration of lung function. Cepacia syndrome is a serious condition that does not always respond well to treatment. Unfortunately, even with proper treatment, cepacia syndrome can lead to death within a few weeks.
In the history of the Cystic Fibrosis clinic in Seattle, no one has ever cultured this strain.
So- we are here, treating Spencer with antibiotics via IV and inhaled directly into the lungs. The bacteria was detected via standard test so we believe we caught this early. The doctors are cautiously optimistic, at best, they can erridicate this bacteria.
We are in strict isolation at childrens. Spencer will be treated for at least two weeks, but we may be able to go home and finish treatm