Re: Parenting Vent Dependent Children
Natalie J. Reineke (reineke_s(AT)nwoca.ohio.gov)
Tue, 28 Oct 1997 20:57:03 -0500
Joanne Kocourek wrote:
>
> Dear Andrea,
>
> I missed your early, descriptive posts to the vent list, but have read
> several of the follow up ones.
>
> I also am the mother of a ventilator dependent child. If I am correct
> there is only one other family on this list that has a ventilator dependent
> child. You are the third. As a parent my/our perspective IS different
> than many of the other list members! When our child's physical condition
> changed we (child, parents, extended family, friends) all experienced
> loses....loses of our dreams, hopes, plans. We all had to make major
> sacrifices and accommodations. The impact is felt physically, emotionally
> and financially. Our children, however, lost the most, sacrificed the
> most. They are also the most resiliant!
>
This is to Andrea and Joanne,
I may be the third parent with a child who WAS vent dependent. Ridge was
born with congenital birth defects. He was in the hospital the first 8
months of his life on a ventilator. They tried to extubate him 10 times
before deciding that he should be trached. At age 4 months he had open
heart surgery and has had 9 different surgeries since. I am happy to
say that his last surgery at 2 1/2 years of age was to close his trach
site. It was discovered that he had a diaphragmatic hernia, that is to
say a hole in his diaphragm the size of a softball, and when that was
repaired he was able to come off the ventilator within a few short
months.
I was at home with Ridge on a vent for about 18 months and did not know
what the outcome would be. The doctors told me that the alveoli in the
lungs will continue to grow until the age of 12 and that they did not
know if the damage to my son's lungs would heal in that amount of time
or not. They were wrong. But in the meantime I was possibly facing a
life time of vent dependancy for my child. I was determined that my son
would be able to do anything a healthy child could do, including walk
around to any part of the house he wanted. His vent was on a cart and I
would wheel it around after him. Towards the end of his vent dependence
when he was only on oxygen part of the time, Ridge would drag an oxygen
tank around by his trach only, no hands. Please know that your children
look to you as to what they can and cannot do. Ridge went to cedar
point (amusement park), trick or treating, shopping in the mall,
everywhere you would take a healthy child. Sure, people would stare at
us, but I often thought that the staring was more out of sympathy and
curiosity then being mean. I am planning on continuing to read mail and
stay connected with the vent users because I would like to share any
information I have learned these past two years with anyone that is
interested.
Natalie J. Reineke
Reineke_s(AT)nwoca.ohio.gov