When your preemie baby comes home after spending 11 months in the hospital, it’s an exciting yet scary feeling. He doesn’t know any other world except the 4 corners of his room . Is he going to like his new room and the different sights, smells and sounds of his home? Will I be able to take care of him? One thing I know for sure was this: I won’t be driving to the hospital and spend 11-12 hours there everyday. My baby was coming home!
Speaking for myself, the best way to beat the scary feeling was to get organized. Hey, there are some things I can’t control but I can control supplies, equipment, setting up the room, and what bedsheets go on his bed! So I focused on calling the DME (that’s the medical equipment company), the nursing care agency, and the discharge nurse and making a list of all the information they gave me in a notebook. I know I will forget most of what they are saying so the notebook guarantees that I don’ t forget a single thing.
I divided my tasks into 3 major parts, equipment and supplies ( respiratory and gastric and everything in between), nursing schedules, and room set up. I will be discussing these in more detail below:
The Medical Equipment Company called me to set up a series of tutorials on how to use and take care of the different machines my child will be using at home. Fortunately, since I go to the hospital everyday, I am used to taking care of his feeding, cleaning his trache site, giving his nebulization treatments, and a little troubleshooting with the vent. But the thing is, some of the hospital equipment are different from the ones that he is going to use at home. The suction machine is loud and so is the nebulization machine. The oxygen concentrator is loud too. For a while, I could not hear anyone ringing my doorbell because it’s hard enough to hear when you’re inside a room but with the sound of the equipment, it’s harder.
As far as medical supplies go like suction tubing, filters, trache ties, feeding supplies and such they have a pretty standard number of items they will give you. Some of it is ordered by the doctor and then some you can request yourself as you see the need for it. Something I learned, make sure you request 30 of something you know you are going to use everyday like trache ties, excilon gauze, in-line suction catheters, and feeding bags. I recommend going over a day of your child’s life in the hospital and identifying the different tasks and the items you need for each so that you can come up with a very specific list. I say this because once their list of items are set, it is very hard for the equipment company to change anything or add to it because they have to go through your insurance and Medicaid if you have it. Make sure you stay in contact with the discharge nurse and the representative that is going to train you on how to use the equipment. Do not go home until you think you know everything there is to know about your child’s vent machine, suction machine (portable and stationary), oxygen concentrator, pulse oximeter, nebulization machine, and oxygen tanks. i had to move our discharge date 3 days because not all my supplies were delivered to my house. I did not want to be opening boxes and sorting through their list when Isaac comes home. I wanted to be ready to take care of him. This removed some of the anxiety in Isaac’s homecoming. I had an old dresser that was good for storing the small supplies and the rest went in the closet. I just labeled the front of the drawers so the nurse and I can easily grab the items we needed. This is something that you can change up as you go along and organize more as you see the need for it. I did place two mats on top of the dresser like the ones you buy at Walmart for drying baby bottles on. I labeled one for gastric items like syringes for the g-tube feeding and medicines that go through his g-tube and the other mat was for respiratory that had his nebulization cups and suction tips and basically anything connected to his trache that you need to wash and dry. This helps keep everything organized and clean. Remember, at home there is no way you can be sterile, just clean! We clean most of the syringes and g-tube items with warm soapy water. I use Palmolive like the ones they give you at the hospital to clean your breast pump items. I also bought Lysol wipes to keep the equipment clean as well as the bed posts and railings. I wrote the number for the equipment company in my notebook as well as saved it on my phone. I think I have exhausted this topic already so let’s move on to the next.
All nursing agencies will hand you a line. They want your business, of course. Make sure you verify everything they say. Ask for your schedule in advance with the names of nurses on it. Make sure there is a good variety of names on that schedule and not just monopolized by a couple of nurses. You might encounter a problem if you don’t like the nurse that came and find out that she has a lot of days on your schedule. The nursing agency might find it hard to get a replacement for him or her. Talk to your nurses when they come. You will be able to determine who are the most experienced and those who are new to home health nursing. It’s important that you find the ones who genuinely care about your child. They are hard to find. Day nurses need to be enthusiastic and ready to play and take care of the baby at the same time. My permanent day nurses are usually very involved in the activities of my son during the day. They are the ones who accompany me to my sons doctors appointments so they need to be quick on their feet and ready to act. They are the ones there during my child’s waking hours. My night nurses are the ones here during bath time and sleepy time afterwards. They don’t sleep! They are free to bring their own devices like laptops and tablets and I even let them use my wifi. I also tell them they can make coffee or tea that can keep them awake. I try to wake up from time to time during the first few nights to check if they are doing their usual tasks like listening to my sons’ breath sounds, suctioning, turning him,etc. Once you find the nurses you like try to keep them in your schedule. The schedulers at the nursing agencies are the ones you also need to stay in constant contact with. One person is usually assigned to your case. This is the person who is in charge of staffing you with nurses. Develop a relationship with them so that they have an idea what things you like the nurses to have for your son so that they are able to match nurses with you and your child’s personality. Nurses are going to be a part of your life for a while and it helps if you are comfortable with them and they are comfortable taking care of your son. I keep a big calendar on top of the nurses desk (yes, they have to have a small desk to put their nursing agency computer on or to write on the different forms they are required to keep up with). On the calendar I write the names of the nurses that are assigned for each day and night. I did this so that my nurses can see the open shifts I might have for the month and they can then consult their schedules and might even decide to work on those open shifts. Staffing sometimes undergo changes each month. Some nurses might go to school or some even decide they want to work either longer or shorter hours. I like to keep things consistent so I really try to keep up with my nurses’ schedules.
My husband and I placed a television inside my sons’ room. First, we told the nurses that it is going to be used for him only. I know John Medina (author of Brain Rules) said no tv before 2. But my son is not an ordinary baby. There are so many things he is not able to do yet because of his prolonged hospital stay. Of course, I still try to limit his viewing only to programs that are for his age level and I make sure I don’t just park him in front of it. I watch it with him and interact too. Most of the things he watches are nursery rhymes shows that he likes to watch everyday! Children love repetition. It assures them because they know what is going to happen next. Anyway, back to the rest of the room. My son’s bed is a hospital bed we got from the DME company through my insurance. It is high like most hospital beds so the oxygen concentrator and suction machine as well as the pulse oximeter are stationed under it. The vent is at the foot of his bed on a stand. I placed a tank of oxygen underneath the vent and made sure that the tank was open. When you need oxygen real fast you just dial in the liter you need. This saves you one step in an emergency which is the purpose of the O2 tank there. The ambu bag is attached to this tank of oxygen and you can do a trial so that you can make sure if the ambo bag is appropriate for your son’s size. The one he comes home with might not be big enough after a couple of months. It might not give him the support he needs. Also keep anothe tank of oxygen close by on a stand just in case the one you have is not enough. My nursing agency provides a Go Bag with all essential supplies that my son might need in case we have to leave suddenly. This is also underneath his bed. My portable suction and big vent battery is under the nurses’ table. As far as supplies go, most of mine is in the closet but I try to keep some that we use everyday in the drawers for easy access so that the nurses don’t have to go diving in the closet every single time. My sons room is small because it used to be our office on the first floor. We don’t keep his bouncer and other big toys in the room but in the formal dining just off his room. The nurses just bring it in as he needs it. The nurses wear shoe covers inside the room and I only use socks or go barefoot. I use slippers for the rest of the house. I also have a lamp that rests on the nurses desk so that even when the lights are low they are able to see things. I have a stethoscope handy for the nurses to use if they did not bring their own. I also have the obturator in a hazard bag taped on the head of the bed just in case he pulls out his trache or he gets decannulated by accident.
Having a child on the vent and g-tube is very challenging and overwhelming. Despite the fact that I have been involved with his care in the hospital it was still different at home because it is just me and the nurse. At the hospital we have a myriad of health workers like respiratory therapist, nurse practitioners as well as the nurse who is actually taking care of him. I decided not to go to work for a while so that I can focus on him at this time in his life. I have never regretted this decision. Sure, there have been sacrifices along the way but all in all, God has been good to us. We have great day and night nurses who truly care about my son and he is making progress. The most important thing is that we are moving on and looking forward to the day that he will come off the vent and will not need his trache. From my heart to God’s!