We are going home! Now what?

One of the most long awaited moments for those who have been in the NICU for any amount of time is the moment when the doctor says “we need to talk about discharge”. Finally, you get to leave this place whose halls and walls you have called your second home. But going home presents another obstacle. How are you supposed to bring your trached, vented and tube fed baby home? There are some things you need to accept and get ready for right off the bat. The experience is overwhelming for all parents! It does not matter what kind of degree they have or how old they are. It is challenging, period! Next, you need to have your head on right.If you need a notebook/binder to keep notes of all the things you are going to need or want to do by all means do it! No one is going to judge you! Having had the experience of bringing my son Isaac home more than a year ago, let me break everything down. This post is all about bringing a trached, vented and gtube baby home!

Okay, the doctor said you can bring your baby home. What exactly does that entail? There are several things we need to discuss. Don’t worry, this will be very detailed so get ready to settle in and make notes. This is based on what I went through so of course after a while you will want to make changes of your own based on what you and your baby’s needs are.

Baby’s Space/Room

These are the essentials:
crib/medical bed
dresser for clothes and some supplies
table and chair for home health care nurse
3 surge protectors- one for baby’s equipment, one for baby’s technology like the tv, iPad, and such, and last for the nurse’s computer and other technology they need to bring
Rocking chair for when you want to hold your baby
Boppy pillow or maybe a bouncer or swing to put your baby during awake time (they cannot spend all day in bed!)

Some parents make their living room the baby’s room and some use their formal dining room. It is very advisable to use the first story of your home for your child’s space. This is more practical and easier especially for emergencies. You do not want nurses trekking up and down just to use the kitchen for making formula and such.

If there is a closet nearby that can be used for immediate storage then that would be the best place to store supplies. You will be receiving lots of boxes each month. It takes getting used to but after a few months you will know how many and how much of each supply you need to get. But we will be discussing that in the Supplies and DME Company section.

Crib/medical bed can be something that your insurance pays for. Medicaid takes longer to supply those but if you have a good DME company then they can give you a bed that is a rental (its brand new) until such time that they can get their paperwork together I would definitely go for it. A medical bed is easier in my experience because it is at a higher level and it is easier to do trache care and baths. It is also better for the back!

I have a dresser that I used for my son’s room. I used one side to store his clothes in (labeled each drawer) and the other side for supplies that I use everyday or several times a day like trache care supplies, medication, syringes and cups used for nebulizing treatment. I also used the top of the dresser for washed supplies like syringes, bottles,and neb cups. I bought a mat that’s used for drying bottles in Walmart and used two different colored mats to separate the things I use for GI and those I use for respiratory. GI of course is where I place syringes, tube extensions, venting gtube paraphernalia, and medicine cups. Respiratory is where I place neb cups and syringes I use to check the water in the trache cuff.

Small things are separated by usage. Gastrointestinal or Respiratory
Small things are separated by usage. Gastrointestinal or Respiratory

Home health care companies have different procedures. For us, we placed a small table with a comfortable (not too comfortable!) chair for the nurses to use for writing their notes and for the computer that their company provided. We also have a lamp on the table so they can turn it on when my son is asleep. This way, they can work properly and see my son while he sleeps. I would not advise that you turn the room into pitch black. It is not safe for your baby and nurses would prefer to work in an environment where they can visualize their patient. The life saving machines are there to give the alarm but remember the nurses are there to look and listen to your baby. Not just the machines.

Hospital Arrangements/Training

As soon as your baby got trached, you should involve yourself in his/her care if you aren’t yet. Doing trache care, gtube care, preparing formula, giving medicines, baths and holding your baby should be part of your day to day ritual. Getting involved early on assures your baby of the best care possible when he/she comes home. You might have nurses when you get home but they will take point from you as to how much you are comfortable doing and which tasks you can assign to them.

Most hospitals make the parents or the primary caregivers to undergo a series of training and rooming-in. They also make you do trache changes. Their objective is for you to prove to them that you are capable and knowledgeable enough to take care of your baby when he/she goes home.

You will also be picking a DME company. DME stands for Durable Medical Equipment. They will be the one to provide you with all the equipment and supplies you are going to need at home. They will also require you to undergo training and orientation on the different equipment (portable and stationary) your baby will be using. It takes a couple of days sometimes to finish the training. My DME company came to the hospital and we just found a place somewhere in the NICU floor where we could do the training. Ask your discharge nurse which DME company comes well recommended. I had to undergo training for the home ventilator, the pulse oximeter, the suction machine and the feeding pump. Fortunately, I was already doing most of my son’s care in the hospital so I was able to go through it with some background knowledge under my belt.

Ask about how you are going home. Hospitals are different from state to state. Some patients go home in an ambulance and some go home by family car. We went home by ambulance. My discharge nurse was able to get authorization for several ambulance rides to cover appointments we needed for the year. Remember, do not get rushed into getting discharged. The last thing you need is to be home and find out you are missing essential supplies!

Once you have completed your training they will tell you when they can bring the equipment and supplies to your house. If they are lagging behind on this for some reason or another let your medical team know so that they do not expect you to be discharged on the date they have set. Your discharge nurse should also be updated and kept in the loop. Allow adequate time to check supplies, put supplies away and have the baby’s room/space ready. I have a page on this blog that enumerates the supplies you need to ask for. It sometimes differ by state what you can ask for but hey, the worst they can say is no. Your doctor’s office is your best support on this. He/she will write the script/order for those supplies that are deemed a “medical necessity”.

Nursing Agency/Home Health Nurses

Before coming home I also had to pick a home health agency that will be sending out nurses to help us when we came home. The number of hours for your nursing coverage depends on a lot of things. It could be based on the doctor’s orders, your private insurance or Medicaid. In my state I think almost all nursing agencies are the same. They employ a variety of RN’s and LVN’s. If your baby has a ventilator you will be needing a level 3 nurse which means it limits the number of nurses you can pick from since not everyone is ventilator trained. Sometimes, you will get some who are new to vents and you know more than they do. In times like these I would definitely call your case manager and let her/him know. I want to tell you right now that most of these nurses work for two to three home health agencies. This is common practice. This is because if their patient ends up at the hospital, they want to be able to work and pay their bills.It is important to find a good fit with your nurses. I have developed relationships with mine and they always try to make sure I have adequate coverage morning and night! Of course there are gaps here and there. The nursing agencies cannot guarantee 100% staffing because there is a shortage of RN’s and LVN’s. No matter what agency you pick you will have staffing issues. I have learned from the beginning to be very firm and very assertive with the schedulers and also ask for help from my Nurse Practitioner from my doctor’s office. When we came home I had holes in my schedule that week because the night nurse that they had placed in my schedule was not a good fit for me. I did not think my son was safe with her. Nursing agencies are always understaffed. The family and the nurse has to be a great fit because this is someone that you will be entrusting your child to and you need to know that they can take care of him/her in an emergency situation. What I strongly suggest is this: ask for a schedule two weeks from the discharge date and verify if they are sending you the nurses that they actually placed there. I also suggest that you communicate with the schedulers always and by that I mean every week or more often if you are not getting any nurses. You should also feel free to ask for help from your case manager and the nursing director. If your child ends up in the hospital because you are unable to cope with his cares (trust me this is not a judgement because it is overwhelming for everyone!) the agency does not make money and the nurses don’t make money either.

When I talk to my nurses I make sure they are aware of the things my son has gone through, and all the obstacles he was able to overcome. I want them to be a part of Isaac’s life and all the progress he will be making. This tells them they are stakeholders in his care and not just someone who comes in for a payday. In return for their loyalty I treat them like family. They are free to use my microwave and refrigerator and I have coffee and tea for them whenever they want or need it. I love to cook so I am always pushing food to my nurses (one of them called me a food pusher! :)). The nurses (especially the day nurses) are the ones you will be taking with you to doctor’s appointments and the ones calling the pharmacy for refills and the DME for supplies not received. You can pick one or two nurses that are great with this task and let them take this task from you so it’s one less thing you need to worry about. You just have to check on them from time to time if they are on top of things or if they need you to make the actual call if they are not getting any response.

Equipment Check/ Supplies/ Changing Equipment Parts

The equipment in your home needs to be maintained especially the ventilator. This is your child’s life support! An RT from the DME company usually comes out each month (this is the procedure from my DME. It might be different with yours so make sure to ask) to check that ventilator to make sure it is working and if there are any parts of it like filters, straps, circuits, heating chamber, temperature probe that needs to be replaced. Since they are the ones who provided you with all the stationary and portable equipment in your home then they are also the ones in charge of maintaining it. Some equipment like the pulse oximeter and the suction machine becomes your own after a year or so, but the company will let you know about this.

Supplies are going to be arriving every month luckily like clockwork! Ask who your customer representative is so that you have a direct line of communication with someone specific in case you were not able to get some of your supplies. My rep calls me about a week before the supplies are supposed to arrive and go through the list with me. I stay in my son’s room and pan my sight at each item she says so that I can tell her at a glance which ones she is missing. I have been doing this for more than a year so I can pretty much enumerate all my son’s supplies. They have technical glitches sometimes when one of your items might be removed from their list so it helps to go over it. If you don’t have this benefit of having someone call you, open and check supply boxes as soon as they arrive and ask the help of your night nurses to go over it with you as both of you put it away. I keep most of my supplies in my son’s closet and a little bit of it out in his chest of drawers for immediate use. Either my nurses or I check the drawers from time to time to see if we need to refill it. Please check out the list of supplies in one of my pages. If they give you a lot of something do not tell them to stop because there might be a month where that supply is scarce and they tell you that it is on back order.

A very important item you get every month is your trache! Some babies are supposed to change traches every 2 weeks and some every month. I suggest you save those traches that you have changed during your child’s hospital stay especially the step down. Most of the time, Medicaid will not pay for a step-down if it’s a custom made one. Bring all the supplies you have in your nicu/picu room. They will throw those out anyway when they clean the room! Bring everything! Gauze, tape, pads, diapers, syringes, sterile applicators, etc. You can even ask your nurse to order you some supplies you want to bring home a couple of days before you go home so you can have some back-up.

As far as changing out the other parts of the ventilator like the circuit, filters, heating chambers and oxygen tubing, each home health agency has a standard schedule for this unless the doctor has a preference. DADS, the agency that oversees home health agencies does not have a specific requirement in how often parts are changed. The only thing they hold the home health agencies for is that they follow what is written in their own protocol. So for example, if the agency says they change the circuits every week then their nurses will follow that schedule. If your agency does not have such a schedule feel free to look up my supply list page and it will show you how often we change certain parts of your equipment.

Respiratory Treatments and Other Medications

Your involvement in your child’s care while he/she was in the NICU/PICU will make it easier for you to deal with medications and treatments when he gets home. My discharge nurse arranged the schedule for the medications and treatments to be easier when we got home. Like medicines and treatments that were supposed to be twice a day were given at the same time, just a.m and p.m. So one is given at 8am and the next one is given 8pm. I recommend giving morning airway clearance on schedule or as soon as they wake up. The treatments before bedtime should be given as early as you can without compromising the number of hours between treatments of course. Example, if you have albuterol for HS (before bed) try to give it early like 7PM or 8PM at the latest so that your child will still have time to get the medication out of their system before having to go to bed. Albuterol raises the heart rate and they might have a hard time settling down to bed.

Before you go home try to find a pharmacy that delivers to your house. It’s not always easy to find someone who will make a pharmacy run. Most pharmacies will also monitor how often insurance can authorize the medicines your child takes. My pharmacy calls me when they have meds to be delivered and I just stock them so I have a stash I can pull from when I need it.A lot of respiratory treatment start with every 4 hours so you or your nurse will be administering it during the time that your baby is asleep. This really sucks! But as time goes by it will get better because your doctor will try to space out those meds when they see that the child is responding well. After respiratory treatments, good CPT is needed and necessary. Some children go home with a vest or a cough assist machine if they have a hard time coughing out their secretions.

When my child was having respiratory treatments every 4 hours and sometimes needed a PRN medicine I get anxious because he is getting more medicine and to me that meant he wasn’t doing good. We have to remember that children with respiratory conditions are very finicky and their condition can change quickly. Your child cannot wait for his scheduled treatment. That is the purpose of PRN medicines. It is given when needed. Albuterol is a rescue nebulizer treatment. It works fast to open up the airways. Good CPT afterwards helps too.

Your child may come home with a lot of medicines. This will not be forever. Weaning medications takes a while and you definitely do not want to wean too fast. The doses on these medicines are based on weight most of the time but some are also based on age. Be very careful in giving medications and double check with the nurses that they have the most current dosage in their chart. Some parents make a chart that they post on the wall in the baby’s room where they place the schedule for meds as well as day to day activities. I wanted to do this when we came home and I had the materials for it but we got so busy with staffing issues that became the priority. I just looked information up in my notebook that I wrote my notes in.

Enjoy Your Baby!

Last but not the least on the list of to-do’s is to enjoy your baby! You have looked forward to this moment! Put on your mommy hat and take off your nursing hat and play and talk to your baby. As mommies and daddies we sometimes get into all the other cares for our baby and we forget that we are not only there to take care of their physical needs but also their mental, and social needs. When they wake up in the morning, do their cares and get them out of bed. Put them in a high chair and talk and play with toys. There are so many types of baby equipment you can put them in so that they are not in one spot for so many hours. That would be so boring and babies need stimulation. Our first baby furniture was a high chair and a bouncer. The bouncer was a little big for him at the beginning and he was just learning to hold his head up at the time. We placed blankets around his trunk for added support. It really helped him though and he still enjoys it up to now when he wants to jump up and down.

The purpose of this article is to help parents navigate the concept of bringing a ventilator, trached, and gtube fed baby home. If you read this article and think that you may need more information about a certain section and I can improve the article in a way that can be of help please do not hesitate to comment.