While it’s exciting to have your child home from the hospital, it also leads to one of the biggest adjustments as a parent/caregiver of a trach/vent child: you now have a limited inventory of equipment and supplies (based on your insurance). Most of the time, your equipment will function properly and you will have enough supplies to care for your child. But, there will be times when your suction machine may be losing its suction or you might run low on suction catheters due to excessive secretions. You want to prepare for these times now to ensure your child is not put at risk.
Here are some key “lessons” we learned with our home equipment:
- Understand All Equipment Operation: It’s important to understand how all your child’s equipment works since you don’t have hospital nurses and respiratory therapists to assist you. And, if you have home care nurses, they may not necessarily be familiar with some of the equipment either. Your DME company should provide you an overview of how the equipment works when the equipment is delivered to the home. If not, ask for it before your child comes home. In particular, if you have oxygen tanks, ensure you understand how to change the regulator on the oxygen tank. If you do not change the regulator correctly, the oxygen tank can go flying and you don’t want to hurt your home, equipment, much less yourself or your child.
- Keep Equipment Manuals Available: At some point, you will run into an issue with your equipment that you have not previously experienced. The troubleshooting sections are–surprisingly–extremely helpful. We actually resolved most equipment problems using the manuals.
- Allow Time for Equipment Set Up: Ensure you allow plenty of time to have your home equipment set up in your home. For example, when the DME company comes to set up the equipment, they will provide some recommendations on the equipment placement. It’s possible you may find out that a circuit breaker change may be required. Therefore, you’d need to allow time for an electrician to perform some electrical work. If your child is part of a Medicaid waiver, this electrical work may even be paid for by the state. Or, additional powerstrips may be needed, furniture may have to be moved, etc. Most of the trach/vent families tend to use a dedicated circuit for the ventilator.
- Not Like the Hospital Equipment: While the home equipment still supports your child at home, it’s just not the same as the hospital equipment. For example, the suction machines used in the home are loud. Therefore, you might want to follow these tips to better prepare the family for these differences:
- Use the “Quietest” Suction Machine: DeVilbiss (respiratory equipment manufacturer) introduced a new suction machine in September 2012 that has a 50% reduction in sound (but it’s supposedly heavier). If you ever heard the previous one, you’d appreciate this sound reduction. Another noted quiet one is the Medela Clario. But, if you travel a lot with your child, DeVilbiss’ Vacu-Aide Compact Suction Unit may be a better option for you.
- Adjust Alarm Volume: While you still need to ensure you can hear any alarms, you can turn them down (especially overnight) so that others in the home can sleep, play, etc. But, keep the alarms loud enough to hear them if they go off.
- Use Equipment Prior to Homecoming: This will ensure you know how to use all your equipment before the child comes home. This not only helps you out, but it also can help out other members of your family. One of our cats came down with “anxiety” with all the changes in the home and had to be medicated. While there are no CDs with “trach/vent” sounds, if you run your equipment in the home prior to the homecoming, others in the family, including any pets, can start getting accustomed to the new sounds.
- Electric Bill Increases: After ensuring your ventilator, suction machine, oxygen concentrator, and feeding pump won’t blow a fuse in your home, it can definitely burn a hole in your wallet. After you receive your first electric bill, if you have any concerns about continuing to afford this increase, call your power company to discuss different payment options. If you explain your situation, they may be able to help you out. Also, you can ask your social worker and other resources about different organizations that might be able to provide financial assistance. Medicaid in some states will even pay the portion of the bill used for the medical equipment.
Here are some key “lessons” we learned with our home supplies:
- Understand Consumption Usage Now: While the child is still in the hospital, take some time to understand which supplies you use the most (suction catheters, HMEs, pulse ox probes) for the child. You will have a better understanding of where you may fall short on supplies.
- Hoard, Hoard, Hoard: When ordering your monthly supplies, order ALL of them at the maximum quantity. You do not want to fall short in times of need, like weekends or the winter. After a few months, if you find there are some supplies where you don’t need the maximum quantity, then you can decide whether to order less than the maximum going forward.
- Typical Supply Shortages: These were the supplies where the monthly allotments (defined by insurance) were never enough for us:
- Suction Catheters: Especially during the winter (colds, sicknesses), suction catheters were a scarce commodity, especially for children with lots of secretions.
- Gloves: We typically used our monthly allotment in less than two weeks.
- HMEs: Our son’s secretions would fill the HME after a couple of hours. Even though we suctioned his HME, it still needed to be replaced. If possible, have your child use a passy-muir valve (PMV) instead of an HME when off the ventilator. Our son hardly needed suctioning when using the PMV, and other parents/caregivers have had the same experience.
- Ventilator Circuits/Omniflexes: Similar to the suction catheters, we tended to run low on the ventilator circuits and omniflexes during the winter. While we would suction some of the tubing, we would need to change out parts of the circuit and the omniflex. Secretions would build up in the tubing and we didn’t want to introduce any additional bacteria into our son.
- Pulse Ox Probes: Because pulse ox probes are on 24/7, they eventually lose their stickiness or they just wear out with activity.
This is how we addressed the shortages:
- Other Equipment Sources: There are some great resources out there to help you obtain additional supplies at a minimal cost. Sites have been set up where others who may have extra or no longer needed supplies can “sell” them to others. Please remember that the “seller” of supplies paid for by insurance can only be reimbursed for shipping. If you had to pay a co-pay, you are allowed to ask for that reimbursement in addition to shipping costs. Please note it is ILLEGAL to offer, sell, or receive prescription medications from another person. Some of these sites include:
- Hospital Visits/Stays: If the child comes in for any hospital visits or surgeries, any supplies in the room cannot be used for another patient. This is often how we’d stock up on pulse ox probes and suction catheters. Instead of being disposed, we would take them home.
- Nursing Agency: If you use a nursing agency, they might have some supplies, like gloves, to give you. But, keep in mind they have many patients so availability/quantity of these items may be limited.
- Reuse: While this is not a recommended practice, we would sometimes reuse catheters more than once, but were “smart” about it. For example, we would typically do this during the summer, when viruses and bacteria levels were lower. We would use a catheter about 2-4 times and then dispose of it. Again, this is not a recommended practice, but was a decision we made to maximize our suction catheter inventory during the winter. Other families/caregivers clean their suction catheters and reuse them. These families/caregivers use either vinegar or a disinfectant germicide called Control III to clean the catheters.
- Additional LOMN: You can also have your doctor write an additional letter of medical necessity (LOMN) for additional supplies. But, keep in mind that this process takes longer through insurance and there is no guarantee that the insurance company will approve it. We only used this process once for suction catheters. In theory, Medicaid must cover whatever your doctor recommends if your child is under 21 and receives financially-based Medicaid or a Medicaid waiver. In practice, however, this can be difficult to achieve.
- Improvise: Sometimes you just have to improvise. For example, if the pulse ox probe was still working but losing its stickiness, we’d use some adhesive tape to keep it on our son’s foot/toe. There’s also a product called All-Fit Tapes (looks like a pulse ox probe sensor without the wiring) or Elastikon (rubber-based adhesive tape) that you can get through your DME company to put over a less sticky pulse ox probe. We would also pull parts off of a new ventilator circuit to use on the current circuit (and save the incomplete circuit for future parts). You just have to be creative sometimes.
At some point, you will run into issues with your equipment. As mentioned earlier, the troubleshooting sections of the equipment manuals are helpful. But, if those suggested resolutions do not work, the equipment will need to be replaced.
In the case where you cannot resolve the equipment issue(s), then you need to contact your DME company for a replacement. It’s imperative you understand the DME company’s policy for replacing faulty equipment, especially during non-business hours (weekends, evenings). During the week, the DME company should be able to send out a replacement to you. If it’s over the weekend, you can call the DME company and talk to the person on-call.
Depending on the equipment, you may or may not get a replacement immediately. For example, if a ventilator or suction machine fails, this equipment will be replaced immediately (same day). But, if your feeding pump fails, then it will most likely be replaced in 24-36 hours.
While you wait for the DME company to arrive, some example back-up options include:
- Suction machine fails: Use back up suction machine.
- Ventilator fails: Use back-up ventilator. In the extreme case your back-up ventilator fails, you may have to use the ambu bag on your child. Calling 911 or going to the hospital may also be an option in the case of extreme circumstances.
- Pulse ox fails: Monitor color of your child, not only the face, but also the lips and fingertips (like what you learned in the hospital).