INFORMATION ABOUT BPD
I am not a Doctor or a Nurse but I do have a lot of experience and
information that I can share. If you have come here looking for medical information
please use your own judgement and check with your own Doctors.
The oxygen and pressure to the lungs that helped save Ashley's life during
the critical phases of RDS and all the other complications she endured, paradoxically,
also delayed recovery. Babies who remain on the respirator for more then one
week most often develop damage to the lungs and bronchioles from high oxygen
doses and high respirator pressures, this is BPD.
The good news is that unlike an adult with a lung disease, a baby with BPD
can grow healthy new lung tissue. And while scarring in the lung is permanent,
eventually the new tissue will compensate for the scarred tissue and should
no longer hamper air flow to and from the lung.
The baby with BPD often suffers from excessive fluid accumulation in the lungs
and other body tissues. Ashley was treated with diuretics for the fluids.
She no longer takes medication for excessive fluid but when she gets a cold
it is unbelievable the mucous and secretions that you hear churning around
in her chest!
Although we were extremely lucky and Ashley did not require oxygen at home,
many parents bring their BPD babies home equipped with oxygen tanks, tents,
monitors, etc.... Our life saving piece of equipment at home has simply been
a nebulizer. This is an electric pump that pushes air through an oxygen mask
to give breathing medications such as Ventolin and Pulmicort.
Children who have BPD are highly vulnerable to colds and other respiratory
infections. During the first few years these children may still find it hard
to breathe. They have chest retractions - a sucking in of the chest around
the rib cage when they breathe. We were told that basically the lung needs
to work in over time to compensate for the scarred tissue. This makes a child
with BPD more tired, irritable, hard to feed and slow to gain weight. I can
honestly tell you that we have mainly suffered from the last 2. Ashley never
slept anymore then a regular baby and she has been nothing but pleasant and
happy since day one but Ashley's eating and weight gain has always been a
bit of a problem but as long as she continues to grow (slow as it may seem)
Doctors have not been overly concerned.
As I sit and write this (it is not 3 o'clock in the morning now...),
Ashley is being whisked off to the Doctor once again. She has a fever and
a very bad cough. This is common with Ashley.
I remember the Doctor that prepared us for coming home telling us that the
first 3 years might be difficult. Dr. Davis YOU WERE RIGHT! As wonderful as
things have been in between illness', it has also been very stressful. There
have been many late night trips to the hospital. In the beginning 3/4 of the
trips were because we were paranoid! We have adjusted to Ashley's disability
and work around it most of the time. When Ashley is in a healthy period, you
would never even know that she has a chronic lung disease. But when Ashley
is sick she is very sick!
Recently Doctors have started saying that Ashley now has asthma. I guess it
is common in these kids. I am not an expert on asthma yet since it is only
in the past few months that they have started saying it.
I would like to stress the fact that no matter how often I complain or get
stressed out, I would not change a thing about my life with Ashley. She is
a miracle and I thank God every day for her.
LINKS TO SITES WITH INFO ABOUT BPD:
CHEO BPD page
Good detailed information about BPD.
The
Chronic Lung Disease Forum
MORE LINKS TO COME........
