10 Things To Know While You Have a Kid in the Hospital

 

1. Nurses are the Best! - And know how to get their attention.

There was a new nurse every 12 hours. The day and night shift would have a half hour meeting at the shift change and then the new one would pop in to introduce themselves. Some were excellent, some were just fine and some were just good at leaving. We learned that the good ones are communicative, personable and patient. They don’t withhold information or leave you to make inferences. A nurse in charge of your kids' care should be talking you through everything they’re responsible for, and explaining the importance of things that aren’t immediately obvious to you. They should show you how to use the call button, should check if your supplies are stocked, and they should be attentive. Nurses in pediatric wards usually have access to fun little extras to ask for, like smaller needles for less pain and bruising, and numbing patches that can be put on a blood draw or IV site about an hour before the poke so the little love doesn’t feel it. One thing they won’t tell you is that the call button is two different alarms. When unplugged from the wall or the red button under wire is pushed, those are the ‘Someone might actually die in here!’ alarms. Pulling the wire out of the wall or pushing that big red button sets off a loud beeping at the nurses station and all of them will come running, literally. This is the alarm reserved for your nurse to set off when they need immediate help in your child’s room. If it gets pulled by you AND it’s not a real emergency, there will be a small hell to pay, and it’s never wise to aggravate the people responsible for your kids' care and comfort. We learned that accidently..oops. I think it's important to know about this alarm, but with discretion.

2. Doctors are people too, but perhaps a slightly different breed. 

I learned this while working for a couple of them and in being back and forth to the hospital so many times while pregnant. I’m glad to have had this knowledge before staying in with the boy. Doctors have 8+ years of intense schooling to finish before they can even think about working in a position where they care for kids like this. In order to get through that without going absolutely bonkers, their brains need to function a little different than the rest of us. I’ve noticed that most doctors don’t realize when their approach doesn’t match the situation. This is not on purpose 95% of the time. I had to learn and remember that when I felt like I was being spoken to with abruptness or like I was a bit dim, it was not intended. If I responded as if it were, the boy’s quality of care would have been obstructed simply as a result of poor communication. Doctors are analytical, clinical, and critical, which makes them extremely well suited for that job. But they are people too, and forget sometimes to show grace and courtesy, just as any parent with a kid in care will do at some point. I learned that if I need to, asking politely for them to elaborate or rephrase works well in finding out whether they intended something to sound the way it did. If the doctor can’t handle that, then they do have a problem. On top of that, a kind but firm approach shows strength, and a kid on a hospital bed needs their parents showing that strength.

3. Momma, the Doctor Doesn’t care about You! 

It’s the job of the doctor and nurses to find out every possible contributing factor to the problem. At that moment, they do not care if the parents made a mistake, and they are not asking in order to shame anyone. When the kid turns up showing signs of trouble, the doctor wants information. For instance, when we arrived at the hospital and were talking with the doctors, I was asked about my ADHD medication or any possible exposure to infection or other drugs while I was pregnant, or if I had smoked anything at all (heck, no!). Then I was asked when I stopped taking my meds after I delivered so I could nurse safely, how his early medical needs were met, if he’d been very sick, if he accidentally got into the medicine cabinet...it went on and on. It did start to feel personal and I started doubting myself, even though I had been so careful and checked everything with my doctor. I had to remind myself regularly that it wasn’t about me. If we as parents are doing the best we know how and not being neglectful, the doctor does not care about us, they just want to do their job. If they’re going to do that, we need to put those feelings where they belong, and just speak honestly. As a side note, I highly recommend seeing a counselor regularly if you have a kid that spends any kind of time in the hospital. Our feelings take second place a lot, we need to make sure we handle that in a healthy way.

4. Write down Everything, Keep track of Everything!

Other professionals would make their way through our room on a regular basis. We had a pharmacist, a head nurse, a social worker, and the resident or student doctors that all came through at least once per day on top of our patient nurse and doctor in charge. They all have a lot of information and not a lot of time. Having a way to organize and record it all makes a huge difference in how well things go. I’ve talked about having a binder before, and it’s here again because it’s so useful and important!  Keeping a binder with blank pages, some dividers, a small 3 hole punch and document sleeve means info sheets don’t get lost or disorganized, questions and observations don’t get missed, and I understand what is going on. It also helps with asking the right questions to the right people so the answers are more reliable, because you have a place to record who is responsible for what.

5. To Test or Not to Test

Because healthcare is federally funded here, they don’t just offer these services to anyone off the street. If the doctor thinks a test should be done, it’s for a reason. Whether it’s to confirm something or rule something out, it’s worth the time and effort. If the doctor is offering a test, it’s because they think that information is valuable to the care and wellbeing of your child. I understand that having needles or probes or scans lined up for your baby is scary. I'm personally familiar with the aversion to subjecting them to potential pain. I've run into this for myself, and with other mommas I know going through tough situations with their kids, and wanting it to be over. It may not seem reasonable that I need to say this because it's the logical thing, but for those of us that need the push to get past the emotionally fueled hesitation, “Just Get the Freakin’ Test” is something my husband I and used to say to each other a lot. So now I can say it to other people. And smother the babe with cuddles and kisses after it's done.

6. The EEG

The first big test the boy got was an EEG, where the nurses glued electrodes to his head in specific spots and recorded the brain activity they picked up over about 45 minutes. This test is mostly painless and is helpful for deciding if there could be brain damage. I say mostly painless because there is about a minute or two of a big bright flashing light, but that’s really just uncomfortable. The boy just closed his eyes...monkey. Additionally, if they manage to record a seizure, it can provide information on what’s happening in the little monkey’s head during the episode. We weren’t so lucky, so it didn’t give as much information as we hoped for, but all the boy’s doctors said that having a clear EEG is very valuable in establishing a baseline for how we should expect his brain activity to look. Therefore, there is no such thing as a wasted EEG. Just get the test. 

7. The MRI

The boy got his very first MRI without playing contact sports, I’m so proud! This is the one where they put the kid’s head in a giant donut and use magnets to see the structures inside. There’s no radiation, it’s just magnets and it’s safe. This test is painless and relatively low stress. It is standard procedure to have a baby or young child sleep through this scan. When we went, they mixed a very mild sedative into some children’s tylenol and gave it to the boy to drink. They also planned as best they could to do the scan during his normal nap time to better the chances of him going down easily by choice rather than fighting the sedative. As soon as he was out, we put tiny plugs in his ears then taped more sound muffling covers over both ears, because it is loud in there. Then he had a blood oxygenation and pulse monitors taped to his toes, and he was set. He was strapped down comfortably, but so he couldn’t shift, and I was given the option to wait in the other room or stay there with him. This is the most calm, accommodating and still important test that can be done, in our opinion. This scan can provide the doctors with a lot of valuable information in any situation. There were no needles or flashing bright lights, there was significant protection from sound, and it was warm and dark. I think I could have slept in there. Just get the test.

*Update*: We went for his second MRI and the difference between what they did for the first MRI and the second one was small. This time they did use an IV sedative, but they used all the tricks to make sure he wasn't traumatized. This time the MRI took one hour. To start him off, he had an oral sedation again, he got a nice and safe high going, and he had the numbing patches put on his hands. Then when he was most of the way to asleep already, he had the IV put into his hand and the 'night-night' drugs went in. It's covid season, so I wasn't allowed to stay, but they were so careful with the extra oxygen and monitors, there really wasn't a reason to worry. I went to my car and my husband and I had a nap. If you have a choice and the ability, anything your child needs done, do it at a children's hospital. They're set up for kids, of course, and they want the kids to be emotionally unharmed incase they need to come back. Take advantage of that. The only thing more I'd say is if your little one is small, a stroller is really nice for coming out. Kids stay real dopey and can be a little up and down, or even manic for a little while after waking up. A stroller lets them relax more for the ride to the car, and a floppy kid can be really tricky to carry. I have a Phil&ted Go that I used, it's small and folds down to basically nothing, but it hauls, and my 32lb bean sprout 2 year old fits in there pretty comfortably.

8.   The right kind of Sticking Up for my kid

It’s ok to nicely but assertively say, “You need to come back later.” In the hospital, everything happens all at once, and then nothing happens for a while. We waited in anticipation constantly, with a battery of tests to have done, and it seemed the most reliable warning we’d get is whether a test would happen that day. Sometimes things were not lined up properly, for example a nurse turned up to take blood less than ten minutes before a bed would arrive to take the boy to his first MRI. If I had allowed the nurse to do what she wanted to right then, the boy would have been upset for his MRI, which he was supposed to sleep through. Everything is planned and needs to happen on time, but a hospital is a great example of a place where the left hand doesn’t always know exactly what the right hand is doing, and advocating for our child and their care is best done by us, the parent/guardian.  

9.   The Go Bag

If hospital stays are going to become a semi-frequent reality for your family, it’s wise to have a hospital Go Bag for the parent staying in. There is a lot of emphasis put on the kids needs when they’re in trouble, as there should be. But we need to be there the entire time as well, and being a parent of a child in hospital is a massive and sleepless job. In order to do that job effectively, we need to make sure we are taking care of ourselves efficiently. I’ve written a list of everything I keep in my Go Bag that helps me take care of myself so that I can care for the boy the best that I can while we’re there, and I recheck that it’s ready to go every other month or so. I have the list in another post, HERE.

10. Leave the room at least once a day. 

You will go insane if you are locked in there too, partly because you aren’t getting the same fun drugs that your kid will. Yes, most likely your kid will have to stay there. But you have to be able to parent effectively in all the ways your kid needs, and if your body isn’t moving and your brain isn’t taking a break, you will not be able to do the job well. If you are the one sleeping there and your partner, or parents, sibling, or trusted friend can sit with the little one while you get your own coffee one time, rather than them bringing it for you, take that time at least once a day. 

Bonus for if you know someone in the hospital:

I know I said 10 things, but this one was super important for us while we were in the hospital so it deserves to be shared. When people come to visit in the hospital, it can be amazing! And it can also be less than helpful. I found that the range of help was diverse and amazing. We had friends bring us meals so that we could sit and eat together without scrambling to find the food first. Some would bring it to the room and then leave quickly, and others would let my husband or I know to meet them in the parking lot so they didn’t disturb the boy. Both were so generous, but often the second was better. I can say that sometimes it felt as though we were expected to entertain the visitors, to a point, and with my baby in the state he was in, I really just didn’t have the emotional space to entertain a guest. I just wanted to sit, eat food, and focus on my kid. I found the things that were the most helpful were the visits that didn’t ask anything of us, but when people felt confident enough with my son to give me 10 minutes to run out and get my own coffee instead, or if someone would come and just play with the boy for a bit and make him giggle. A few people were very good at coming for a short visit, recognizing when we had reached our limit and excusing themselves before we had to gently ask them to go. Having that awareness was the nicest thing we experienced from people. It meant that we could enjoy others’ company, the boy could have some fun and see a new face, and the visit would only last as long as we had the energy. If you know someone in the hospital that is willing to have guests, this would be the best piece of advice I could give you to keep in mind when visiting.