Breathing Support and Interventions
Introduction
As the children with
Hydranencephaly are living longer, they’re also needing more support and
intervention to keep them healthy and comfortable. For most of the children,
breathing issues are a major concern. When a parent or Dr. expresses a concern
about breathing one of the first things looked at are the tonsils & adenoids and
having them taken out. If that doesn’t help the child breathe better, then often
he or she will have a tracheostomy. If that’s not enough then various types of
breathing supports such as ventilator or bipap are used. Although, at this time,
the number of children on a ventilator are small, I think their use will
increase in the coming years. In this chapter I’m providing info on these
various supports so that if they’re suggested for your child you will have some
understanding of what is involved. When Kayda was alive, ventilators were seen
as something horrible and only a last resort, and one that would never have been
offered her by the Doctors in our area. However over the last few years I’ve
seen several of the children with Hydranencephaly go on ventilators or bipap and
have seen how much that has improved their quality of life and has given them
more happy years with their families. At this time there are about 5 children
using ventilators and all of them are at home. None live in a hospital. Yes,
they have inherent problems but no longer should they be seen as a horrible last
resort for a child. The Doctors here felt the same way about Tracheostomies and
would never have performed one for Kayda.
This chapter contains some
information on the various breathing interventions that may be used in a child
with Hydranencephaly. Again they are here for information purposes only. Your
Doctor will help you figure out what is best for your child.
If your child is starting to have
trouble breathing at night, the following are several procedures that may be
suggested in order to open up his/her airway. One of the common problems our
children face is something called obstructive sleep apnea. This is where
something impedes the flow of air in the airway.
Often the first procedure that is tried
is the tonsillectomy and/or adenoidectomy.
Tonsillectomy
http://www.cincinnatichildrens.org/health/info/surgery/tonsillectomy.htm
Adenoidectomy
http://www.cincinnatichildrens.org/health/info/surgery/adenoidectomy.htm
Uvulopalatopharyngoplasty or a "UPPP"
This is a surgery that is
usually done for adults with obstructive sleep apnea. One of the children has
had it done and it has prevented him from needing a tracheostomy. It is included
here for reference purposes only. Just so you know of the surgery. Obstructive
sleep apnea is fairly common in children with Hydranencephaly. The first thing
tried is to take out the tonsils & adenoids. If that doesn’t help, the UPPP may
be tried.
For more information on sleep apnea and the UPPP
surgery please go to the following link
Tracheostomies
If the above procedures don't improve your
child's breathing sufficiently a tracheostomy may be suggested. The following
are links to the best information online about tracheostomies in children. This
information is included in the book "Caring For Your Child With
Hydranencephaly".
Tracheostomies are becoming more common in children with Hydranencephaly
Aaron’s Tracheostomy Page (this is the
introductory page for the website. It has a table of contents on it. I'm
including links to the pages that appeared in the book. For more information
follow the links on the table of contents page)
http://www.tracheostomy.com
What
is a Tracheostomy
http://www.tracheostomy.com/what.htm
Reasons for a Tracheostomy
Tracheostomy Complications
Home Equipment
http://www.tracheostomy.com/equipment/index.htm
Trach & Ventilator Pictures from Nancy
Here are some pictures of a
humidifier set up, a “nose” and a child on a ventilator-from Nancy, mom to
Daniel (12/7/95-1/9/05). These are pictures of Daniel’s brothers Tommy & Jonah
(not hydran).
Tommy is trached and needs moisture to keep his secretions thin. This set up is
just for that. There is tubing connected to a trach mask that has elastic to
keep it around his neck
I
use an ultrasonic nebulizer. There are other ways to deliver the humidity. I can
also hook up "in line" an albuterol neb if he is sick. The medicine then gets
delivered directly into the lungs via the trach. He does not have this on all
the time actually only when he sleeps or is sick.
During the day he is on his "nose" it also serves as a humidified type system.
In people without a trach their nose serves as this. It heats, cleans and
moisturizes the air before it reaches the lungs.
This is a speaking valve. It allows the air to
go in through the trach but forces the air to go out through the voice box. The
valve closes on expiration and forces the air up through the mouth and nose.
Then instead of suctioning the trach they get boogers in their nose!
Ventilators
A growing number of children with Hydranencephaly are using some form of
mechanical ventilation at home. It's no longer being seen as a last ditch option
for children. The following is a good over view of the various types of
breathing assistance that's available.
Information about Ventilator-Assisted
Living©
http://www.post-polio.org/ivun/about_val_1.html
Mechanical Ventilation, Personal
Experiences
Nancy, mom to Daniel (12/7/95-1/9/05)
Daniel had several episodes when he was a baby at one month that suggested
seizure activity. At that time his breathing stayed pretty good. After a few
months the seizures caused him to struggle breathing. On inspiration his tongue
would fall back in his throat and would choke him. This started happening
anytime he cried. He was trached at around six months. It dramatically improved
his alertness and happiness. I was able then to administer albuterol or any
other treatment for the common cold to pneumonia. Without the trach at this time
I thing Daniel would have been a very sick boy with recurrent pneumonia's. You
can suction the trach and "make" them cough, clearing the lungs better. Also
when the secretions get thick there is always an airway that is accessible.
Daniel started to have sleep apnea and also shallow breathing. At five years of
age we put him on a BI- Pap machine for breathing support. He only needed that
at night but he also used it when he was sick. This also helped get his lungs
expanded to keep them healthier throughout the years to come. He was able to go
places in his wheelchair without any breathing support. When he was seven years
old he was put on a ventilator. He also used it at first only at night or when
he was sick, He gradually started needing it more and more. Daniel was his happy
self always regardless if he was on or off the vent. He didn't really care he
just knew he was comfortable. When Daniel's life seemed to be coming to a close
the vent was left on all the time. His lungs could not be cleared anymore and
infection could not be controlled. He stayed on his vent through out the whole
dying process. He was very comfortable that way he never struggled or looked
like he was gasping for air. He died peacefully one night from multi organ
failure. I removed the vent after his last heart beat. I am so grateful for such
a peaceful death that I could give to Daniel. Jonah was trached at six months
or so because of recurrent upper respiratory infection that compromised his
breathing. He is also on a vent at night to keep his lungs expanded and healthy.
He has a voice when he wears his "speaking valve"
Here’s a picture of
Nancy’s son Jonah (originally diagnosed with Hydranencephaly, but now thought to
have Porencephaly) on his ventilator. As you can see, it doesn’t seem to be
making him uncomfortable at all.
Other pages in this section
Respiratory glossary
Back to Health
Conditions table of contents page
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