A tracheotomy tube, or trach, is a cast like tool to keep an airway open. A hole, also called a stoma, is made by incision to open the front neck. The trach tube is placed in the stoma (hole) and used to bypass the mouth/nose airway in order to provide airway access in an otherwise challenged airway system.
Click on this link, for more information about a Tracheostomy: http://www.tracheostomy.com/resources/surgery/yoursurgery/index.htm
Kayli was born with mild Tracheomalacia (a floppy upper airway), which can cause obstructive apnea (interruption of breathing). Tracheomalacia and Broncheomalacia (floppy airway leading to the lungs) can be common in people who have muscular challenges, such as; Cerebral Palsy, Preemies, Trisomy 13 and Trisomy 18, Muscular Dystrophy, and other neuromuscular disorders.
Although Kayli was born with mild Tracheomalacia, she was able to breathe on her own, through the floppy airway, with a little help (air pressure or oxygen). Kayli's Tracheomalacia only affected her when she was in certain positions (her floppy airway would collapse and then open again), or if she was sick.
When Kayli was 7 months old, a home care nursing accident resulted in a Tracheostomy (placement of a trach tube). Unfortunately, simply because of her Trisomy 18 diagnosis, Kayli was refused evaluations and treatments for 3 weeks after the nursing accident. She suffered, breathing through a pinhole sized airway, because many ENTs (Ear Nose Throat dr's) in the Chicagoland area, claimed it was futile to treat her (while she carried a Trisomy 18 diagnosis). Those professionals followed a Futility policy, deeming Kayli would die regardless of treatments, because of her Trisomy 18 diagnosis. I will discuss this more in the months to come, as Kayli and I hope to change this worthless label attached to a Trisomy diagnosis. Promoting movement for change of the futility policy and worthless label, blindly attached to a Trisomy diagnosis, is Kayli's Krusade! :D
Fortunately, a surgeon from Loyola took Kayli on as a patient (after 3 weeks). Upon his bronchoscopy findings in the OR, the ENT surgeon gave Kayli a trach. Once the trach was placed, it acted as a cast to keep her airway open. Kayli did not need oxygen, and could breathe on room air (there is 21% oxygen in room air) but needed a way to humidify her airway. Typically, we breathe through our nose or mouth, each of which have a natural filtering and humidification system (hair follicles, etc). Our trachea (airway) does not have similar filtering and humidification systems, so outside systems must be in place.
While at home, Kayli wears a trach mask that attaches to a humidified tubing and equipment system to provide her with humidified air. When Kayli leaves home, she has an HME (humidified filter) on her trach. As her spine conditions worsen, she is needing more oxygen to breathe, so she also has portable oxygen when she leaves home.
|To the bottom right, behind Kayli, you can see her humidification system, with the blue tube going to her trach mask, around her neck.|
|Out of home, with HME and portable oxygen|
There was no pathway in getting Kayli into the aquatic therapy/swimming program at her school, so we had to pave the way for Kayli and her peers with a tracheostomy. The guidelines that we used to make it a win win situation for all, was to address the follow concerns:
- Can we make it safe and effective for a trached student to participate in a pool setting?
- Who takes the liability for medically fragile students in a school program?
- What is the emergency plan?
- What (if any) extra equipment is needed in the pool area for the trached student?
- What is the protocol for aquatic therapy/swimming (who does what?)
- What are the risks of a trached student in the pool?
- What are the benefits of a trached student in the pool?
- Do the benefits outweigh the risks?
- Does a dr give consent for the trached patient to participate in a school setting?
- What (if any) additional medical conditions challenge or alter the safety risks?
Once all the questions and concerns were addressed, we placed the aquatic therapy goals in Kayli's IEP (Individual Education Plan), thereby making Kayli the first trached student at her school to be in the swimming/aquatic therapy program!
Kayli's first day in her school pool will be this Friday!
One of many reasons why we advocated for Kayli to go in her school pool, is because Kayli genuinely enjoys being in bodies of water! She has been in the ocean, goes to the public pool in the summer, and loves her bathing time in our tub at home! While in the water, Kayli smiles and is learning to kick and slap the water around her! The following, are some positive attributes of Swimming and Aquatic therapy to consider:
1. Increased Circulation
2. Water viscosity provides resisitancy for strength training
3. Reduction in gravity, supports safe gait training and strengthening without injuries
4. Warm water relaxes muscles (great for hypertonia!)
5. Warm water and buoyancy eases pain sensitivities
6. Increased trunk support, balance, and body awareness
7. Reduced stress on joints
8. Increased range of motion and flexibility
9. Quality of Life
Although I do not recommend ALL persons with a trach should participate in water activities, I DO recommend assessing the person with a trach as an individual, while deciding if it is in his/her best interest to participate in water activities. :D
While researching for, and setting up Kayli's IEP goal of aquatic therapy with a Trachesotomy, I found the following links to be helpful in deciding what was needed, for Kayli's best interest:
- Periodical, The ventilated patient undergoing hydrotherapy: a case study http://www.aquatictherapist.com/index/2008/07/ask-arn.html
- Larkel Device (snorkel eqiupment for Laryngectomee) http://www.webwhispers.org/library/Swimming.asp
- Special Needs, flotation devices: http://www.abledata.com/abledata.cfm?pageid=19327&top=12965&ksectionid=19327&trail=0&discontinued=0&viewall=1
- Special Needs aquatic therapy tools: http://www.danmarproducts.com/, and http://www.sprintaquatics.com/
- In home, therapy pool: http://www.waterwaybabies.com/
- Swim sweater https://www.swimways.com/swim-sweater-p-20.aspx (I purchased this for assistance with Kayli's balance while in the pool).
- Tracheostoma Swimming devices: http://www.voiceprostheses.com/tracheostoma/wassertherapiegeraet/#c1625
- You tube video of kiddo with a capped trach http://www.youtube.com/watch?v=ivLZWLnr0r
- Capped, Vented Trach ideas http://www.tracheostomy.com/forum/archive/index.php?t-1222.html
- Caplug (piping hardware that will fit a trach for less expensive, and easier capping)http://www.caplugs.com/productdetails.aspx?id=1000020&itemno=T+SERIES