This FAQS page is still undergoing revisions. Please check back from time to time for updates. If you have questions that you feel should be included please email me at clalunio@gmail.com

FIRST DAY HOME EXPECTATIONS

What can I expect from my child’s first day at home?

Coming home is both an overwhelming and scary feeling at the same time. From a housekeeping point of view ( this is something you can control) it is best to start bringing home all the stuff your child has from the NICU. You might think all his/her things are small but they do add up. I had to bring my son’s belongings home for 3 consecutive days so that I can set them up in his room. Try to limit the things that you have to do on the actual day so that you can just devote your time to your child when he/she comes home.

The nurse from the home health company might not arrive on time that day and you will have to make sure that his medicines and nebulizing treatments are on time. You will also be signing a ton of paper work from the home health company as well as the DME company. There might also be last minute supplies coming in that day. Planning and being organized before your child comes home will go a long way in making the homecoming less hectic.

I would also make sure that when the vent and other equipment is set up that you ask the respiratory therapist from the DME company to check the set up. Some equipment like the ventilator they want plugged into the wall and some are okay on a power strip. I would get a coule of power strips so that one is just dedicated for equipment and the other one can be used for the nurse’s computer from the agency as well as for other devices that are being used in the room. 

FIRST TRIP TO THE DOCTOR

What can I expect from my first trip to the doctor?

A great transport company is important for a trip to the doctor. We always go by ambulance so that I have 3 other set of hands. I have my nurse, and the two paramedics that go with us. There are 3 adults in the back of the ambulance with Isaac while one drives it. When we get to the doctor’s office the two paramedics wheel the stretcher all the way to the office and waits for us outside to finish. I bring with me 3 bags: the Go bag (contains all the things we need for an emergency), the diaper bag, and the portable suction. If you want to get a list of what a Go Bag needs to have,  I will also be addressing that on this page. I will also list what I put in my diaper bag.

NURSING STAFF

Which nurses should I keep?

I know this answer will vary but as parents we are all after the same thing which is keeping our child safe. I would keep nurses who are self-starters or who can be autonomous and does not need to be told constantly what needs to be done. I like nurses who notices if my child is in distress or having trouble without me bringing it to her attention. I talk to my nurses a lot and try to get to know them. It is hard to find good nurses nowadays. I would also keep nurses who have experience behind them as well as some new ones if they are eager to learn. I would also ask my nurse what they would do if the vent suddenly alarms and shows a disconnect or low pressure. If they answer that they will quickly look at the circuit from the patient to the ventilator and check for any disconnection and that this should take only a few seconds (10 or less!) that is the first correct answer. I would ask then what they would do if they do not see a disconnection. They should answer that they will check if the patient is in distress or if the sats are dropping. If they are they need to start bagging and while they are bagging they should pan their eyes again over the whole circuit to see if they might have missed something. 

Some nurses are quick to respond to emergency situations because they have been in one or they are used to it. But some nurses do not respond the way they are trained to do. Real life is different than the training in school or mock-ups. As a parent, I found that it took me a while to respond to an emergency. I had this urge to fix whatever the problem was instead of taking the next step and bagging my son. I have moved on from that and have cited what happened to every nurse that is taking care of my son so that they can avoid the same pitfall.

Can I ever leave the nurses alone and what measures should I have in place before leaving my child alone with the nurse?

I always have another person with the nurse because it is always better to have two sets of hands. We have had situations before when my son needed to be suctioned immediately, the oxygen needs to be turned up at the same time and he is throwing up! It is different for each family as sometimes both parents have to work or you are a single parent. I would recommend training the nurses to bag immediately at the first sign of trouble. Also have emergency numbers by the bed. They should call 911 first and say that it is a child on a ventilator so the paramedics are prepared. These are the numbers and other information that should be posted by the bed, not the nurse’s binder:

Parents numbers, Relative or close friend number (should be reliable), doctor’s office, Address of the home where the baby lives. This last item is important!

ROOM SET-UP AND SUPPLIES

What are the things you should prepare prior to going home?

If your child is vented and trached make sure you have asked questions about all of his equipment and get ready to immerse yourself in nurse staffing, equipment and supplies, room set up.

What bed is appropriate/best for my child?

It is your child so you determine what is best. But in my case, I asked the DME/equipment company to provide us with a hospital bed that is similar to the one in the NICU. This ensures that there is room for the circuit to go through, it can be reclined, and it is at a safe height for you and the nurses to take care of your baby.

Where should I place the oxygen tank?

The oxygen tank should be placed under the vent. There is room for it underneath. Make sure the tank is open but the knob is set to zero. Attach the ambu bag to it so that in case of an emergency you grab the bag, turn up the oxygen and bag.

Should I have a spare tank in the room as well?

Oxygen tanks should be stored where they won’t fall or tilt. I have a spare tank in the corner of the room for back up and a spare ambu bag for back up as well.

What kind of ambu bag should I have?

 Important: Put a sticker on the ambu bag with your name and address. In an emergency situation the person bagging and calling 911 at the same time can just read off the label. When emergency situations arise, sometimes people forget even their own address. Typically, you should bring the ambu bag that your child has been using in the NICU. You can even ask them for another new one. The DME company will send you one too. Keep this because the bag you get from the NICU might not be enough for your baby as he/she grows.

What should I provide for nursing staff?

I have a small table in a spot in the room where they can put the chart or computer and do their work. I also tell them that I keep coffee and tea in the pantry and they can help themselves to it any time.

How do I ensure I get enough supplies and they arrive on time?

The first time you get supplies they might bring them to you in multiple deliveries. Do not let your child be discharged from the hospital if your supplies are not complete. You do not want to be opening boxes when your child comes home for the first time. Ask for a contact person at the DME company that you can talk to every time.

What type of supplies do I ask the DME company?

Ordinarily, the doctors office have put in a request for the number of circuit, heater, and the number of pulse ox probes. They will go over the supplies with you initially. It helps to be well informed. Ask for 30 trache ties, 30 trache care kits, excillon gauze or t-sponges for the stoma, cotton tip applicators for g-tube care, 4 g-tube extensions, 30 in-line suction catheters, 30 feeding bags, and enough formula for the month. The rest of the supplies are pretty much standard but those above are always hard to get approved. If the number they are giving you is not enough and you ask for more they will have to first course it through the doctor’s office and then your insurance before they send it. So if you demand this from the beginning it will help lessen the stress of your child’s homecoming.

All supplies should be delivered to your home prior to baby’s homecoming so that you can sort it out and place it in your closet or whatever type of organization you might have in mind.

How do you keep up with all the supplies?

The supplies usually come every month. I keep a list of the ones that came the month before at the beginning but now I just pan my eyes around the room when I have the representative over the phone  when she goes over the supply list with me. 

How do you know when to change them?

The orders on when to change them usually comes from the doctors office or in the plan of care that comes from the nursing agency. Of course, the nursing agency follows the lead from the doctor’s office.

 

THERAPY

How does my child get necessary therapy?

Normally, the discharge nurse will refer you to a company that they know. Make sure that the company works with pediatric patients.

TRANSPORTATION

How do we go to doctor’s appointments?

The discharge nurse will also recommend a transport company that you can use. Ask for parent recommendations.

Can we drive to the doctor by ourselves?

Of course it is possible to drive to the doctor by yourselves. But I always believe in having extra set of hands. I go to the doctor’s appointments with my home health nurse and the transportation company provides two people with the ambulance.

TRACHEOSTOMY CARE

How often should you do tracheostomy care?

It really depends on how you were doing it at the hospital. Some kiddos have more secretions and have to do care twice a day.

Should I use hydrogen peroxide in cleaning the stoma?

Hydrogen peroxide is great for cleaning once in a while but it is better to use sterile water in cleaning the stoma. You can make your own by boiling water.

Is nystatin cream/powder good for tracheostomy care?

I put nystatin powder on the trache ties and rub it in so that there are no excess particles that can go in the stoma. I apply mupirocin around the stoma especially when I see green secretions on the gauze or smell something like a wet dog or fruity odor. This is the smell of pseudomonas.

Should I allow my nurse to do tracheostomy care?

That is entirely up to you. I seldom ask mine to do it. My reasoning behind it is that it guarantees that you see the state of that stoma everyday. 

What materials do I need for tracheostomy care?

Go to my article page Tracheostomy care. Each parent has a different way of doing it so the procedure I have outlined is the way I do my care and only serves as a guide.

VENTILATOR ALARMS/SETTINGS

(UPDATE ON THIS POST!!!)

I quizzed my DME’s RT when he came for his monthly vent check up. I asked him about alarms and also the scenario below. So I am having to change my point of view. Knowledge is power!

Apparently, the low pressure and high pressure alarms on the right side of the LTV1150 are important in monitoring decannulation as well as the presence of a mucus plug. I discussed this in a previous post on “What’s Happening”. Let me go through it again here. When a child gets decannulated the machine senses a low pressure because it is no longer blowing into a specific space. But, the alarm will not turn on if the low pressure alarm setting on the vent is TOO LOW! My son’s PEEP is 8 so the RT recommended that my low alarm setting should be 6. A rule of thumb is to only go down 2 values below your PEEP. The machine does not sense a human lung, it only senses a difference in pressure. So after a two breath delay (something that is an internal alarm), the vent will alarm if your child gets decannulated. Now, as far as mucus plugs go, the high pressure alarm plays a big role. In the event of a mucus plug, the vent will increase its pressure to remove the block (this is automatic). But again, if your high pressure alarm setting is too high, it will not alarm. My RT recommends the high pressure to be only 25 values more than the PIP. Please be reminded that when your child is upset or he/she coughs that this will also create a high pressure.

One thing I just learned from being in a Facebook page group with Moms of Trache Babies is this:

The ventilator (LTV1150) does not alarm when the baby gets decannulated. This is something really serious that parents and nurses need to be on the lookout for. I questioned some of my nurses about it and apparently one of them experienced it with another patient. She said that it is important for nurses to watch and keep an eye on the patient because some babies love to sleep prone and if you can’t eyeball the trache you need to make sure you listen for any unusual sounds. In her experience, she said the baby was in a very dark room because the parents did not want her to be disturbed. Now, we do not want our children to be disturbed when sleeping but we also need to know that our children are safe. The nurse has to be able to see!

What alarms should I watch out for on the ventilator?

This is really hard to answer because not everyone has the same ventilator. My son uses the LTV1150 so I will talk about that. You need to look out for DISC/SENS alarms because this means there is a tubing disconnected somewhere. You can troubleshoot this in a few seconds, no need to panic. Always start from your child and go towards the ventilator. If in a few seconds you cannot find the problem area grab your ambu bag and start bagging while trying to look again with your eyes where the problem area is. The ventilator can also show this alarm when water gets into one of those tubings that is attached to the Y part of the tubing (it’s where the blue and white tubing are attached). If this is what happened, drain the water back to the main tubing, disconnect the whole circuit from your baby and shake it so the water will go down.

Another one is the LOW PRESSURE alarm. This alarm is set off when you suction and you hold it too long. It will also go off when one of the tubings is disconnected slightly.

The HIGH PRESSURE alarm also goes off when your baby coughs.

What does ventilator settings mean?

When your child got trached they sometimes change the settings on the ventilator in preparation to coming home. Doctors want to make sure the settings are not too high that they don’t have any more room to go up just in case the baby gets sick and need more support. The ventilator in the hospital is way smarter than the one we bring home:)

 

CLEANING AND DISINFECTION

What do you use for cleaning the equipment?

We use Lysol or Clorox wipes to clean the equipment like the vent, oxygen concentrator, suction machine, crib as well as the bouncer, walker and other big toys. The night nurses are usually the ones who do this because they have more down time in the evenings and some of the equipment will not be used at that time.

For small toys that go in my son’s mouth my night nurse usually washes them with water and Palmolive dishwashing detergent.

The suction machine container is washed by the nurses every shift. They usually wash it with Palmolive detergent but some nurses like using half water and half vinegar and put mouthwash in the bottom of the canister.

G-Tube Care

I use applicators to clean my son’s g-tube area. This needs to be cleaned at least once daily. I sometimes use half peroxide and half sterile water for my cleaning solution if the area looks a little raw. But most of the time I use sterile water. 

Check the balloon every week to make sure that there is enough water and that it is not leaking. Milk/formula can leak around the site and irritate the skin resulting in breakdown because of the acids in the stomach. The syringe I use for this is placed in a snack size ziplock bag so I only use it for that purpose.