That week in the hospital was strangely familiar to some of Jaycee's other admissions. I have become accustomed to how our hospital works and what to expect with Jaycee's admissions. While in the hospital, I have brief encounters with other parents. Some parents have spent significantly more time in the hospital than me. Others are clearly first timers. It got me thinking about how much I have learned about hospitals in the past 9 years. Most of our hospital admissions have been at St Louis Children's Hospital for respiratory issues. Certainly, experiences vary from hospital to hospital and for an individual patients needs. If you are relatively new to hospital life or will be going in to the hospital with your child soon, then read these to discover what it's like to be in the hospital.
1. I can guarantee you, sleeping will be difficult for you and your child.
In our hospital, only one parent is allowed to stay in the child's room. Sleeping options are a couch, a chair that folds out for sleeping, or the worst possible scenario-a regular chair. Besides the less than ideal sleeping options, there's the fact that the room is never totally dark, there's often people in and out of the room, and there are beeps from monitors and IVs. If you have a roommate, then it's even harder because there's twice the noise.
The other parent who can't sleep in the room gets to sleep in the parent lounge. This person doesn't have it any better. Due to problems with theft, the parent lounge is lit up all night. (Yes, isn't it awful you have to worry about theft while your child is sick?) The light really bothers me unless I'm just exhausted. Usually, the sleeping options out in the lounge are couches and sleeper chairs. The parent lounge is filled with other tired parents snoring, watching tablets, or talking on the phone. Neither sleeping option is great, but I tend to sleep better in the room with Jaycee. I have started taking Tylenol pm in the hospital to help me drown out some of the background noise. I have learned to be thankful for whatever sleep that I actually do get. Obviously, the best way to get sleep is to go to a hotel, but that isn't always a good option financially or for the child.
2. Things are done on the hospital's schedule, not on yours.
I use to get so angry when my child's P.M. medications were given at 9 at night after she had fallen asleep. I didn't see why the medication couldn't be given at her normal times. I would tell the nurse she got her medications at 6 am and 5 pm, which didn't seem to make a difference to them. After several admissions, I finally discovered that if a child gets a medication twice a day, then it is given once on the morning shift and once on the evening shift. Things are done on the hospital's staff schedule. You must adapt to it.
3. Some things are done at inconvenient times at the hospital.
Labs at 4 am sound reasonable right? Just when you go back to sleep, how about an X-ray at 5 am? I use to get so annoyed with these, but I learned it was done in part so that the doctors could have all this information for morning rounds.
How about a bath at 4 am? Sure, why not? It's a common practice in the ICU for us. I learned baths are typically done during night shift in the ICU because they generally have more down time than day shift. It may not make sense to you on why things are happening when, but I am sure there is a good reason for it.
4. Your child's skin will most likely leave bruised, irritated, or with small scabs.
Pretty much every admission for Jaycee has involved blood work, a nasal swab for viruses, and an IV. Jaycee is not an easy stick, and I'm well aware that even the best nurse can miss more than once with Jaycee. This results in bruises, sometimes many of them. In the ICU, the doctors generally like to have more than one IV line for Jaycee. To get 2 IV lines, multiple sticks may be necessary. Then things get worse when there's PICC lines, central lines (like the one in her neck in this picture), and arterial lines which will all leave small scabs and sometimes scars. Add to that tape (see picture) and stickers for leads and Jaycee's skin can get very raw and red.
5. Care is only intensive in you are in the Intensive Care Unit.
I use to think that Jaycee being in the hospital at all was cause for extreme monitoring and frequent checks from the nurses. I learned that a child in the hospital doesn't need monitored 24/7, unless they are in the ICU. A monitor may beep for several minutes with no one rushing in to your child's room. You may push your nurse call light button and no one may come for what seems like ages. But here's what I have learned: the nurses are busy. They are taking care of many people. They know which patient needs more intensive care. If you are not being checked by a nurse often that probably means your child is getting better. It's a good sign. But, it could be a sign that your nurse is terrible, so ya know!
Now, in the intensive care unit. It's different. The sickest kids will get 1 nurse assigned to them for a 1 to 1 ratio. When Jaycee had several IV lines, needed constant monitoring, and was on a ventilator, she received her own nurse. As she got better, she shared a nurse with another child. The care is intensive in the ICU. There's always a nurse (and usually a doctor) around to grab for any concern or need. Being in the ICU is really nothing like being on a regular unit in a hospital.
6. Opportunities to see the doctor are few.
This may vary from hospital to hospital. But at our hospital, the interactions with the doctors are limited. A doctor will usually come in early before rounds to check on Jaycee. We always try to be at rounds because that's when the doctors are present to report about Jaycee's progress and plan. That's the best time to ask questions and share any concerns because it may be the last time you see the doctor that day. If there's a change for the worse, then the doctors will make a sudden appearance. But, the doctors aren't just hanging around checking in frequently. This is the difference between the floor and the ICU. The ICU always has doctors around. They are close by because kids in the ICU are more prone to needing immediate attention. We usually have short chats with the doctors 3 or more times a day in the ICU, which is extremely helpful when things aren't going well.
7. It is to your benefit to be kind to the nurses.
Because you have limited interactions with the doctors, the nurses are crucial to your child. For the most part, we have had very caring, knowledgeable, and efficient nurses. Once in awhile, there's a nurse that just messes things up or doesn't know how to care for your child properly. But, I try to give nurses the benefit of the doubt. I know they are busy, work long hours, and have many responsibilities. They may make mistakes. If they aren't major ones, just let it go. Smile at the nurses. Ask them how their day is. Don't call them in the room for every little thing. Respect their time. I have "befriended" many respiratory therapists and nurses that have allowed me to get new information about Jaycee. There have been some burning questions I have had about Jaycee that I finally got brave enough to ask through some chats with nurses. Nurses that have worked their specialty for years are very knowledge. They are great people to ask questions to.
8. There are many rules at the hospital designed to keep the patients safe.
Our hospital has rules about the number of visitors at one time and restrictions on children visitors. At our hospital, siblings can visit but no other children can. Sometimes it's a frustrating rule, but it's a good one. There doesn't need to be a room full of child visitors bringing in their own germs and being loud for other patients. But, this is a rule I see first timers struggle with. Another rule first timers have difficulty with are those for children admitted with a virus who are in isolation. When your child is isolation, they cannot leave their room or the unit. Yes, it can be boring, but it's for the safety of the immune-compromised children.
9. Discharge is not immediate.
The first few times I was told Jaycee was being discharged from the hospital, I started packing up our belongings and was ready to go. Little did I know, I would sit there for hours before we would actually get to leave. Prescriptions needed to be wrote, discharge papers had to be signed, medications needed to be relabeled, and follow up appointments needed to be scheduled all before we could go home. It seems like this should be done quickly right? Not most of the time. If Jaycee and I actually leave the hospital before 1 pm, I consider it a "quick" discharge.
10. This is the most important one... The sooner you accept the way things are at hospitals, you will be happier.
It's easy for a sleepy and stressed parent to get frustrated and upset about little things that happen in the hospital! The sooner you learn how things are and give up your idea of how things should be, it will decrease your stress. Your child's recovery is the number one thing you should focus on. Let all the little stuff go. Sleep when you can. Take breaks when you can. Ask questions when you can. And just be thankful for day you leave that place.
I would be interested to hear how you interact with other parents, I rarely do. Everyone keeps pretty separate, even when the coffee cart shows up. I don't know if it's a germ phobia issue, stress or something else.
ReplyDeleteI have slept pretty well at our children's hospital, the bench pulls out into a bed and they have that for every room setup we've been in, more than 15 rooms so far, often more than once. But that's on the regular surgery floor. And probably due to not having sleep in the previous day dealing with sick kid who can't turn the corner fast enough to avoid an admission. Fewest interruptions are when one is on viral precautions (isolation). They don't do a lot of tests when people are asleep, although that may be more of a factor of the issues my child is in for and her history of certain tests not helping. For surgery we adjust anything to make kid ready at the drop of a hat. I wash in the evening if spouse stops by, because surgery rounds start at 6:30/7am depending on day of the week. Weekends are never the same. Rounds go from most to least concerning with some factors for floor layout thrown in. Always worst when they start with your kid. If there's a problem or pressing question the nurse can pass the message along to the on call nurse or resident (neurosurgery always has one, we almost always belong to them). EMU might be radically different, do that next month. That'll be devices only on airplane mode and can only use special charging plugs when there, that will be some serious internet withdrawal.
We always are careful to know next shift change for our nurse so we only interrupt hand offs with a serious problem.
The IV team has been great for us! My kid is super hard to get a line into and after becoming dehydrated, harder still. We also appreciate child life. Some years we spend a lot of time but there are always health care issues we are working on, lots of anxiety around going to the hospital, child life is a great resource.
-AJ
Hi AJ! Sounds like you have learned how your hospital works too! Rounds on the floor are just done according to who my child's nurse is. Rounds in ICU--I can't figure out the pattern. Maybe that's a good thing! And it sounds like you have pretty good sleeping arrangements!
DeleteAs far as how I talk to other parents....at St. Louis Childrens every visitor wears a badge that tells if they are parent, grandparent, or just visitor and the floor/unit the patient is on. So it might say PICU parent/guardian. So generally in elevators or by the vending machine someone might say, "oh your kid is in the ICU too. How long have you been here?" Usually we just have a short chat or two an then just say hi in the hall. The hospital doesn't want you to become "friends" with the other parents, especially in ICU because they don't want a germ transfer. Everyone is aware of that, so no one becomes to chummy. But it's nice to say a quick word or two to someone especially if I'm with my child alone.