Hospital to Home: 6 tips for managing life with a trach vent baby
Homecoming Day:
1. Get to the hospital earlier than you are told, because everything always takes longer than you think. 2. Be prepared for a ton of instructions on medications, feeding etc.
3. Take as much stuff home from the hospital as you can the day before because you've got more stuff piled up at the bedside than you probably realized.
4. Be ready for a few hours of craziness when you get home. If possible, try and have two caregivers present because one person will need to be caring for baby while the other signs about a thousand papers from your Durable Medical Equipment company and your Nursing Agency.
5. Contact your DME and your Home Nursing Agency the day before discharge to make sure that everyone is on the same page (What time to be at the home - are they meeting you at home or the hospital, do they have all the equipment ready for you when you get home). This should happen without your initiation, but I've heard many stories of miscommunication that have made for nightmarish homecoming days.
Tips for Life at Home:
1. Get organized.
Every family of a medically complex kid has their own system for organization, and I will share with you ours, but at the end of the day you need to find a way to get organized that makes the most sense to YOU. I've become friends with some amazing families over the last year with medically complex kids and we all have different ways of doing things. None of them are wrong or right, but it does help to come up with a system. Each month you will get a shipment of about 6 boxes (or more) of medical supplies. Your job is to find a way to organize them so they are easily accessible and and not creating mess around your home. Here are a few things to think about:
- Consider where you will be using most of your supplies: We will talk about creating "separate spaces" in a little bit, but you need to figure out where your baby is going to be spending the majority of their time and have a good, organized set up there. Harper spends the majority of her time downstairs, and we do trach care, g-tube care, baths, meds etc downstairs, so we store the majority of the supplies we need easy access to in our living room. However, Harper naps and sleeps the night in her room upstairs. She no longer gets g-tube feeds during the day, so we store her g-tube bags and pump upstairs in her room. We also have her on a schedule where she gets her inhalers after every nap and after waking and before bed at night. So we keep her inhalers upstairs in her room as well.
- How to organize supplies: We use a lot of plastic storage bins in my house and my label maker is my best friend! I've seen some families that use over the door shoe hangers (I don't love those because they make a lot of noise when you open the door, and I've found storage drawers hold more supplies.)
- Consider most-used supplies: Pulse ox probes, q-tips, saline bullets, gtube syringes, trach and g-tube dressings - among other things are all among our most used supplies, so we keep a stock of them downstairs, and an additional stock in Harper's room. For less frequently used and extra supplies - circuit tubing, suction parts, oxygen tanks etc we have a closet upstairs that is used only for medical supplies.
- Emergency supplies should be easily accessible: Ambu-bag connected to oxygen, suction machine, spare trach and trach change supplies should all be within arms reach in any part of your home where you spend time with your baby.
- Find a vent set up that is easy to move: It may not seem like it now, but very soon your little babe will get bored of sitting in the same 6ft radius of your home. While you will be spending a lot of your time in the same room, having a vent set up that allowed us to move all of her equipment at once really helped us. The DME company will most likely provide you with a vent stand, however it doesn't allow you the space to organize everything together. We bought a $25 rolling cart from Target, took out the middle section, and organized everything on that. The top of the cart sat the vent, and on top of that the water bag along with hand sanitizer and saline bullets. On the bottom we fit the suction machine and pulse ox. The heater clips to the front pole. We velcroed a power strip to the back of the cart and tied all of our chords and wires with velcro ties to keep from having 100 wires all over the floor. Less wires all over your floor makes everything much easier to move around, not to mention it looks much cleaner! Along the side we clipped our go-bag with emergency trach supplies. We also bought a clear plastic mat (like the one you keep under a rolling desk chair) to protect our hardwoods, because the cheap wheels will tear up hardwood floors! With this set up we can easily move harper over the the dinner table for meal times!
2. Separate spaces.
This is definitely a matter of opinion, but I feel pretty strongly about it. When we first came home from the hospital, Harper never left the living room. She ate, slept, pooped, you name it - in our living room. We were terrified to leave her even for a second to walk into our kitchen 2 steps away. This means either my husband or I were in the living room as well. We didn't have night shift nursing so literally we basically always were in the same room as Harper, even if it was just to watch her sleep. By the time my husband went back to work, I felt completely like a prisoner in my own home in a prison run by a tiny dictator named Harper. I was going INSANE. Finally we worked up the courage to start moving Harper upstairs at night, and then eventually for naps as well. Having time where I could literally just be in a different room from Harper was a huge step in gaining my sanity back. I know right now you're probably thinking you cant imagine a day that you'll get to that point with your little one, but you will! Having said that, take your time. Don't do anything that makes you uncomfortable, and certainly don't do anything that puts causes your baby to be unsafe. I don't regret the few months we spent with Harper (and us) living downstairs, however i'm sure glad we're past it.
A few things you need to make this work well:
- **You need to be at a place where your baby is stable enough to tolerate time off the vent.**Harper has two full set ups and for night time and naps we quickly pop her off the vent and walk her up the stairs and pop her back on. She is more than stable enough to handle these few minutes a few times a day off the vent, but there was a time when she may not have been, so use your discretion. You know your baby best, and always listen to your doctors and respiratory therapists!
- A good baby monitor with a camera: The key for me to feeling safe having Harper in another room was a good baby monitor set up. But we don't keep the camera faced on her... instead we mostly have the camera pointed at her sat monitor. With the volume up, I can usually tell what she's doing by her breath rate and heart rate without even having to look at her. This allows me to watch her sats from downstairs!
- A second vent heater: Many insurance companies will not initially cover a second vent heater - which you will need to have two wet circuit set ups in your home. They'll give you a second vent for travel, but only one heater. What the doctors don't always tell you is that most of the time, with a letter of medical necessity, insurance companies WILL approve a second heater. But it takes time and effort on behalf of the doctors to write these long letters of necessity, so many times they'll tell you it won't get approved. Ask them to write it anyway.
3. Develop a system and a routine.
Every parents approaches schedules and routines differently, but I have found that for a baby with complex medical needs, a routine is extremely helpful. A routine (specifically with naps) allows me the time to exercise, spend time in prayer, catch up on laundry and do normal person things for a few hours a day, which is SO important for a medically complex mama to have some personal care time. I can schedule coffee with a friend or a phone call during this time. It even allows me the freedom to work a few hours a week which has restored a sense of accomplishment to my life I had felt like I was lacking for a while after Harper was born. Harper's routine is not completely rigid, which allows us flexibility with doctors appointments, therapies and just general life interruptions. Her schedule looks different now than it did when we came home, but overall, the idea is the same. Below is the routine we use for Harper:
Harper doesn't always go down at 9 for her first nap. Sometimes its 8:30 sometimes it's 9:15. Depending on her cues. Up until about a month ago, she used to nap for a full 2 hours in the morning, but now, at just under 9 months corrected, she rarely naps for more than an hour in the mornings. You can create whatever routine you like, and whatever works for your baby, but having a general routine has helped me tremendously. Give yourself a few weeks after coming home to discover what routine might work best for you!
A note about meds: Something to consider when you are developing your routine is a med schedule that fits nicely into your routine. Your baby will most likely be on a lot of medications at least at first. Consider how you can lump them together to make life easiest on yourself, and consider choosing times that fit well with feedings.
4. Take calculated risks.
Taking a medically complex baby home from the hospital is probably the scariest thing you have ever done or will ever do. There is a ton of fear wrapped up in everything - even just normal every day tasks. Driving in the car was terrifying at first because I always feared a medical emergency. Germs are EVERYWHERE and its terrifying. The LAST thing you want is to wind yourself right back in the hospital for a respiratory infection, and you know full well a simple cold could send you right back. However, you CANNOT live in complete fear for the next 5 years of your life. Fear is exhausting, and the isolation that comes from having a medically complex kiddo is already hard enough. This trach/vent journey does NOT have to be the end of your life!!
Cost Benefit Analysis.
I know nothing about business, but everyday my husband and I engage in a cost benefit analysis. Let me explain. Harper getting sick and needing to be hospitalized from someone else's common cold is a REAL risk and is not something we take lightly. So, we COULD keep Harper locked up in our house all day every day in order to keep her safe - no visits from Nan and Paps, no walks around the neighborhood - just us... at home... always. What is the benefit of that? Our chances of her going to the hospital decrease. But what is the cost? Isolation, loneliness, Harper missing out on relationships that are incredibly important to her social development, limited experiences, lack of exposure to any germs means a weakened immune response from Harper... not to mention, being cooped up in my house all day would almost quite certainly send ME to the hospital. SO - for us - the benefit, does not outweigh the cost. Keeping ourselves locked up does not decrease our risk of sickness enough that I'm willing to sacrifice our entire lives on its alter. However, we do take Harper's safety very seriously. So, every person who comes to our house removes shoes, coats, and bags, and washes hands or uses hand sanitizer before even walking into the living room, and during flu season everyone needs a flu shot. No one who is sick or has been sick in the last two weeks is allowed to come to our home. We have even stricter protocol for cold and flu season because the risk of illness is much higher. There is a cost to this as well. It is inconvenient for visitors. But that is a cost I am willing to pay because the benefit far outweighs it.
FUN.
We take Harper to the pool, on walks, and occasionally to church or a restaurant with outdoor seating. We want Harper (and us) to have FUN experiences together as a family. Harper's entire life shouldn't be put on hold just because she has some complex needs. She needs different experiences to help her develop. And WE need different experiences with her to bring some normalcy into our lives. The risks we take are calculated. We mostly do things that are outside to help minimize the risk of germs spreading. But they are just that... risks. Everything we do in life with our kids - medically complex or not - involves risk. We cannot avoid it entirely. But in my opinion, all good things in life require risk!
5. Train your nurses and then trust them.
You may find this hard to believe, but one day you will be able to trust another human being with your child. After months of watching Harper so unstable that she could have died at any moment, the PTSD from my NICU experience made it incredibly hard for me to trust anyone else with Harper's care. So I get it, its terrifying to trust another person with your fragile little baby... but you need to start making steps in that direction once you get home. It may take you months (It took me 4 months before I was willing to leave the house and leave Harper in the care of one of our nurses while she was napping... and I think it took me 2 months to even let our day-shift nurse even touch Harper!) I was a mess. We had a lot of issues with home nursing in the beginning. I'll tell you right now, it's nothing like the nurses at the hospital. Most home nurses that walked though our doors that we were told were "Trach Vent trained" didn't know how to use an inline suction, give inhalers or tell you the first thing about a ventilator. It was maddening. So, here is how we proceeded:
- Adjust your expectations: After a few weeks at home, my expectations changed from thinking that "trained" nurses would know as much about how to care for Harper's medical needs as I did. We soon began to expect that we would need to train every nurse that walked through our door on the basics of trach/vent care. Some nurses knew more than others... some got offended that you were telling them things they already knew - I didn't care. Each of them got the same training from us. And we did not let them alone in the same room as Harper until they could SHOW us they knew how to do what they needed to do (suction, rescue breaths, inhalers, meds, feeds, trach change ** I only make nurses that I am going to leave alone in the house with Harper show me a trach change - night nurses that work with her while we are asleep in the home are instructed to wake us up if she needs her trach changed**)
- Qualities to look for in a good home nurse: Are they capable? Are they capable of learning the skills necessary to care for your child? Are they teachable? Are they teachable enough to let you train them on your child specific care? We've had nurses tell us that they've been nursing for X amount of years so they didn't need us to train them. OR lie to us about what they knew how to do because they're embarrassed. These are huge red flags. Teachability is probably my number one quality I look for in a nurse. The best nurses are the ones who are able to say "I am unfamiliar with that, can you teach me how you like it done?" Run far away from a nurse who tries to give you the impression they know everything. Are they loyal? We now have had 3 night nurses leave our case unexpectedly. One because she got promoted to a manager position a week after she started working with Harper, another because he left the agency to work for another agency, and a third because she was "freaked out" about a situation we had with bed bugs (which we are pretty sure she tracked into our home in the first place). Our day nurse is one of the most loyal people I have met and we feel incredibly blessed to have her. I cannot even begin to explain the frustration of having a nurse that you spent time training and trusting leave your case. I would almost rather have not had them in the first place.
- Give it time: You probably won't end up trusting every nurse on your case with your child alone. Thats ok. But for the ones you believe are capable, teachable and loyal... give it time, and work towards trusting them.
Our day nurse is almost as familiar with Harper's care as I am. She knows her routine, she is capable of doing all of her care including responding in an emergency. (I know this because I watched her before I ever left her alone.) She is better at getting Harper to go back to sleep for a nap than I am! In the beginning however, I STRUGGLED to trust her. I wanted to do everything myself and I was losing my sanity because of it. It was a HUGE leap of faith me me to trust her - even just to put Harper back to sleep when she woke up from a nap - but now that I do, my life is 1,000 times easier. Not that I would ever choose this life style, but what other mom has a free built in babysitter M-F 7am-3pm? During Harpers naps I can run to the store, or Starbucks or work out or do my job or work around the house, and I NEVER have to call a babysitter. This is a huge unexpected blessing of the trach/vent life - but only because I pushed myself to trust.
6. Take care of yourself.
Last but not least, you need to take care of yourself. You CANNOT be a good parent to your child if you are unhealthy. Are you struggling with the post-traumatic stress of the hospital? Are you angry at God and life for dealing you these card? Great. Me too. Go see a counselor. Yes, it costs money and time... but if your car needed work you wouldn't keep driving it until something dangerous happened, would you? No, you'd invest the time and money and get it fixed. Our souls are much more complex than a car and there is no easy fix, but our souls are also far more valuable than a car - or anything else for that matter. They're the only thing we get to take with us at the end of this life. So take the time and the money and make a good investment. Is your marriage struggling because of the stress and pure exhaustion that comes with raising a medically complex child? Me too. Go see a counselor, and prioritize a date night at least once a month by asking one of your trusted nurses to come and watch your baby.
Whatever you need to do to keep yourself healthy, find ways to do it. Utilize home nursing or family members. For me, it is finding time to be in prayer and connect with God, exercising and spending time out of the house with friends. When I stop prioritizing those things, I can feel it.
Guilt. There are many of you who are probably struggling with the guilt of leaving your child or letting someone else care for them while you take care of yourself. I know this was the main reason that kept me from caring for myself for so long after Harper came home. Creating a routine that incorporated scheduled nap times really helped me, so I could do some self care while Harper slept... however, there came a point when I simply needed to let go of the notion that I somehow had to prove or earn my "manages everything without skipping a beat, does it all, doesn't need sleep, best mom in the world" status. I can't do it all. There is freedom in admitting that. Harper has had, and will continue to have needs I cannot meet for the rest of her life. I cannot control her outcomes. I cannot keep her from getting sick or even from having an emergency or even from dying. All I can do is be the best mom I know how to be to Harper each day, and the rest is in the Lord's hands. But being next to Harper at every minute of the day and never giving myself a rest from her doesn't make me a better mom. It just makes me more tired, more irritable and less patient. Do yourself and your baby a favor and spend some time caring for yourself!
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