Tracheostomy for ALS Patients: Home Care Insights

Q: Tracheostomy for ALS Patients: Home Care Insights

Hello： Tracheostomy is typically performed by thoracic surgeons or otolaryngologists (ENT specialists). <br>Prior to the surgery, it is necessary to evaluate coagulation function and assess for any bleeding tendencies, as well as to check for any anatomical abnormalities in the n

Regarding tracheostomy?

My wife, who is 28 years old, is a patient with amyotrophic lateral sclerosis (ALS).
Currently, she is experiencing respiratory difficulties and uses a positive pressure ventilator for home care.
She needs suctioning, but she finds it very uncomfortable and is quite resistant to it, making it difficult for us to perform the procedure.
The follow-up hospital in Qianzhen suggested that if suctioning is ineffective or the patient is uncomfortable, a tracheostomy could be considered.
After discussing with my wife, she is open to the idea of a tracheostomy.

I would like to ask the doctor the following questions:
1.
After the tracheostomy surgery, will she need to be hospitalized? If hospitalization is required, how long is the typical stay before discharge? (My wife is very averse to hospitals, so we prefer home care.)

2.
Given that my wife is currently in a period of respiratory distress, we are leaning towards home care after the tracheostomy, and we are capable of providing that care.
I would like to know the differences, both advantages and disadvantages, between home care and respiratory care.
Thank you for your response, doctor.

YoYO, 30~39 year old female. Ask Date: 2020/02/09

Dr. Jiang Junyi reply Neurology

Hello: Tracheostomy is typically performed by thoracic surgeons or otolaryngologists (ENT specialists).
Prior to the surgery, it is necessary to evaluate coagulation function and assess for any bleeding tendencies, as well as to check for any anatomical abnormalities in the neck and chest.
Since this is a respiratory procedure, it is usually done on an inpatient basis.
The overall complication rate for the surgery is approximately 9% (including issues such as wound bleeding, infection, subcutaneous emphysema, pneumothorax, and hemothorax), with a mortality rate of about 0.9%.
Patients should be able to be discharged within three days post-surgery if there are no complications.
Regarding home ventilators and care in a respiratory care unit, the decision can be based on your caregiving capabilities and whether the patient requires a high-flow ventilator (for in-hospital use).
Current ventilators are quite advanced, and many alert patients opt for home ventilators.
It is advisable to consult with a thoracic surgeon or an ENT specialist to discuss examination and treatment options.
Wishing you good health and peace.
Dr.
Jiang, Department of Neurology, Taoyuan Hospital, cares about you.

Reply Date: 2020/02/09

More Info

Tracheostomy is a surgical procedure that involves creating an opening in the neck to place a tube into the trachea (windpipe) to assist with breathing. For patients with Amyotrophic Lateral Sclerosis (ALS), this procedure can be a critical intervention when respiratory function declines significantly. Your wife's situation, where she is experiencing respiratory difficulties and requires suctioning, indicates that a tracheostomy may provide her with a more stable airway and potentially improve her quality of life.

Hospitalization After Tracheostomy
1. Post-Operative Hospital Stay: After a tracheostomy, most patients will require a hospital stay for monitoring and recovery. The length of stay can vary based on individual circumstances, but typically, if there are no complications, patients may be discharged within 2 to 5 days post-surgery. During this time, healthcare professionals will monitor for any signs of complications such as bleeding, infection, or issues with the tracheostomy tube itself.
2. Home Care Considerations: Given your wife's reluctance to stay in the hospital, it is essential to discuss with her healthcare team the possibility of a shorter hospital stay or even home care options if her condition allows. However, it is crucial to ensure that she is stable and that you have the necessary support and resources at home to manage her care effectively.

Home Care vs. Respiratory Care Facilities
1. Home Care: If you and your family are considering home care after the tracheostomy, it is vital to assess your ability to provide the necessary care. Home care involves managing the tracheostomy tube, suctioning, and monitoring for any signs of respiratory distress or complications. You will need to be trained on how to care for the tracheostomy, including how to clean the site, change the tube, and perform suctioning safely.
- Pros: Home care allows for a more comfortable and familiar environment for your wife, which can positively impact her emotional well-being. It also allows for more personalized care and flexibility in her daily routine.

- Cons: Home care can be demanding and requires a significant commitment from family members. If complications arise, you may need to seek emergency medical attention, which can be stressful.

2. Respiratory Care Facilities: These facilities specialize in managing patients with respiratory issues, including those with tracheostomies. They have trained staff who can provide comprehensive care, including regular suctioning, monitoring, and emergency interventions.

- Pros: Patients receive expert care from respiratory therapists and nurses, which can lead to better management of complications and overall health. This option can also relieve family members from the burden of constant care.

- Cons: Being in a facility can be emotionally challenging for patients who prefer to be at home. Additionally, there may be restrictions on visiting hours and the overall environment may not be as comforting as home.

Conclusion
In conclusion, the decision between home care and a respiratory care facility should be based on your wife's medical needs, your family's ability to provide care, and her personal preferences. It is essential to have open discussions with her healthcare team to understand the best options available and to ensure that you are adequately prepared for the responsibilities of home care if that is the chosen path. Training and support from healthcare professionals will be crucial in managing her care effectively at home.

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