|
|
|
Hydranencephaly Resources in caring for a Child with Hydranencephaly Physical Care of a Child with Hydranencephaly Difficult Times
Pt. 1: Taking Care of You Book: Caring for Your Child With Hydranencephaly
Printed Materials |
Care of Ill ChildGeneral
Care How to interpret oral,
rectal, and underarm temperatures Cool mist humidifier or steam vaporizer?http://www.parentsplace.com/toddlers/health/qas/0,,239261_101291,00.html This section contains some information about various aspects of caring for a child who has respiratory problems or is ill. Each section is presented for informational and reference purposes. Each technique needs to be prescribed by a child’s physician and the procedure needs to be taught by a nurse or health care professional for each specific child.
Oxygen
Administration 1. A doctor must prescribe the amount of oxygen administered (like any drug) and theuse of the oxygen must be monitored closely. 2. Again, like any drug, it is possible to give too much oxygen. Guidelines set up by the family physician and the health care team must be followed closely.
Assessment: The most important tool you can use is your senses. Look at her colour, look at how she breathes, listen to the sounds of her breathing and count the rate of her breaths when at rest and when at play. Each child will have their own specific guidelines for the use of oxymeter and oxygen. Be familiar with them and have them close at hand. Assess the child during the oxygen administration and look for any changes - positive and negative. Is the colour getting better or worse? Are the respiration's getting faster and does she appear to be working harder to catch her breath? Whenever in doubt (you're not sure how bad it is, you're not sure how much, or how to administer the oxygen, anything that concerns you), call 911. Make sure that your CPR certificate is updated at least once a year.
Administration
of Oxygen by Nasal Cannula 1. Wash hands well. 2. Ensure all the appropriate tubing is attached correctly. 3. Ensure that the environment is safe (see below). 4. Explain what you are going to do to the child before starting. 5. Assess nasal passages and remove secretions as necessary. 6. Apply the nasal cannula and make sure that it is not on too tight or too loose. 7. Turn on the oxygen to the litres per minute prescribed by the doctor. Sometimes a specific rate may not be specified but the order may read to say keep oxygen saturation above a specific rate. If this is the case, begin the administration at 1 - 2 litres per minute and increase gradually as needed. 8. If the child requires more than 3 litres per minute of oxygen, the oxygen concentrator must be used in conjunction with the liquid oxygen on a 50-50 ratio. For example if the child requires 5 litres of oxygen per minute (Ipm), the concentrator is set at 2.5 Ipm and the liquid oxygen is set at 2.5 Ipm. The tubing that goes to both units is joined by a y-connector, which is then attached to the nasal prongs. (note when using both the concentrator and liquid oxygen the humidifier bottle should only be attached to the concentrator.) 9. If the child requires more than (the amount prescribed by the Dr) litres per minute of oxygen to keep her oxygen level above (level set by Dr), she needs to be transferred to the emergency department, 10. Check the tubing behind the ears frequently to make sure it is not irritating the skin. Tubing that is on too tight may result in skin breakdown and infection. 11. Remove the cannula every four hours (except at night) and assess the skin and clean the area well
Cleanliness/infection: · therefore it is very important that the supplies all be kept clean · they should be cleaned after each use and stored in an appropriate place · hands should be washed before and after each use (if possible) · following proper cleaning routines will help in the prevention of infections
Combustion/electrical
Hazards: · do not smoke anywhere near the oxygen · check extension cords and other wires to make sure that they are not frayed
·
do not use oil based products (i.e.,
Vaseline) or flammable solutions (alcohol based products) on the child. If you
need to use a lubricant use a water-based one like K-Y jell Drying of Respiratory Tract
Please note: This information is here for your
reference only. Suctioning must be taught for each child by a health
professional.
Chest Physio/Airway Clearance
Techniques Here is some information on Airway Clearance and what may go wrong in our children's abilities to clear their secretions. The creators of The Vest put it out, which is a wonderful new invention. And, of course the articles come out in favor of the Vest. But it's good information. What is Airway Clearance? Normal Airway Clearance Impaired Airway Clearance
The Need for Airway Clearance
Vicious Cycle of Poor Airway Clearance Airway Clearance Needs in
Respiratory-Compromised Medically fragile Children: An Overview The Vest Postural Drainage The article is written for children with Cystic Fibrosis but it also applies to children with hydranencephaly. Performing postural drainage and
chest percussion for cystic fibrosis
Chest Physio (CPT):
Personal Experiences: Noah, age 4: We learnt to do chest physio from an early age with Noah because he had frequent chest infections. Our PT showed us how to cup over his back and chest while lying on his side. She did it over the top of a towel but we find it a lot more effective if we just do it over a thin layer of clothes. We do it very firmly and fast and when he is particularly chesty we try to do it for at least 20 mins a day - on each side (cupping on chest and back). We have also been shown how to shake his body in time with his breathing to get things moving, but this really needs to be shown by someone qualified before attempting it. Chest PT really helps Noah to loosen any infection and always helps him to cough and bring it up. We have learnt to have the suction machine close by to suck anything out that he coughs up. We also do a lot of 'informal' chest PT such as bouncing on a large physio ball and also just moving Noah as much as we can so things don't have a chance to sit too much in his chest. Alternatives To Frequent Pokes for Iv's and blood work: Children with Hydranencephaly tend to have very small veins and with the number of times they need to have blood work or ivs it gets very difficult and painful for a child to be poked repeatedly. Doctors are tending to use Central Lines, Med ports or Picc lines to relieve the difficulties. Here is some general information in case any of these are suggested for your child. There are a variety of ports/lines that can be inserted. Here is a brief description from Lynne, mom to Nikki: Infusa port, hide a port, and med port are all implanted into the chest wall and infuse directly into an artery, for long term use and use of drugs that are caustic to veins, you can draw blood from a port. The picc is a line that s threaded into a vein and is intended for a much shorter time, you cannot draw blood from a picc. The Mediport/Infusaport is being used for many of the children. The following is presented here for your information. If you child gets a mediport a nurse or dr will train you in how to care for it.
Long Term Venous Access Peripherally Inserted
Central Catheter (PICC) Central Venous Lines (CVP) Other pages in this section: |
|
Subscribe to the
Hydranencephaly Mailing list
August 16, 2001- January 12, 2005 This website is funded in loving memory of Jason S. by his mother Kammy The information on this site is provided by families, caregivers, and professionals who are or have been caring for a child with Hydranencephaly. Please report any broken links or missing photos to angelbearmom@shaw.ca
|
