Tips for Parents and Loved Ones of the Hospitalized Child
I feel I now have a bit of experience with my child being hospitalized-for both planned surgeries, NICU, and unexpected sicknesses including 3 hospitalizations for sicknesses (PICU, regular rooms) for aspiration pneumonia once, flu and pneumonia for 7 week total, and an almost 2 week stay in PICU and regular rooms for RSV as well as a tonsillectomy at age 2. So I would like to share some helpful hints for both parents AND for family, friends, visitors, pastors, etc, from the perspective of a parent. 🙂
FOR THE PARENT
1)BEFORE you take your child to the hospital, remember that there is no shame in being sent home if your child is not in crisis, BUT if in your gut you feel like something is worse or not right, take your child in! Things can go from bad to worse quickly, and you want that to happen at the ER, NOT at home!
2) If you have a scheduled surgery coming up, ask questions. There is no dumb question. Be an advocate and find out what risks come prior to the surgery. (For example, if your kiddo has a congenital heart defect, find out if you should limit their exposure to others, and find out to what extent you should do so.)
3) Take friends up on their offers to get food, let your dog out, etc. They want to help, or they wouldn’t have asked. And not taking offers for help doesn’t make you super mom or super dad, either. Depending on how your child is doing, you may even want to have a parent spend the night at the hospital while you get rest at home/a family member’s home. You need to be well rested for your child, and trust God and the medical staff to hold down the fort. You can always call for updates and ask your “sub” to call you with updates. (I know this can be hard for some parents, but I promise it does NOT make you a bad parent. )
4) Chances are, a lot of people are going to want to know how your little one (or teen or young adult !) is doing. Instead of wearing yourself out by texting everyone you ever met, ask a grandparent or sibling to take care of updating people outside immediate famiy so you can talk to medical staff and be with your child. That being said, allow yourself breaks to talk to friends or get on facebook, etc. if that is what will help you keep your sanity.
5) Ask your child’s treatment team questions. If you feel your questions are not being answered, or they are making you feel like you are a burden for wanting to know what is going on with your child, that is NOT ok. Most hospitals, especially children’s hospitals, are designed to include parent participation and it is your RIGHT to know your child’s health information. At our child’s hospital, there is even a system in place to notify a special Medical Emergency Team if you feel your child is worsening, but either the staff is unavailable or is ignoring your concerns. Find out when your child is admitted what these phone numbers are rather than waiting for this situation to happen to you.
6) Even if your child is sedated, talk to your child. He/she will be able to hear your voice and will be comforting, or at the very least, they will feel your presence. It will do you some good, too.
7) Limit visitors at your child’s bedside and be mindful about the amount of time there is a lot of noise, touching, and other stimulation. They need their rest, and the nurses are probably not going to be telling you “that’s enough for today.” Be your child’s advocate, even if you have to hurt some feelings without meaning to.
8) Talk to your child’s staff to find out how at risk for infection he/she is. If there is a risk, you have to discern if you feel comfortable with allowing others besides parents back to see your child. Again, the staff won’t be likely to tell you “I wouldn’t let many people back.” If you think its a risk and feel uncomfortable, just tell people why you are limiting visitors (in a nice way of course.) They should understand, but if they don’t…your child’s health is way more important than enduring an awkward moment or two.
9) Be there for your baby even when you aren’t really there. For when youIf you have a hospitalized baby, and you cannot stay overnight (such as in many NICUs), ask if you can tape-record your voice reading a book or singing so your baby will get to hear your voice and be calmed. I bought one of those voice recordable books from Barnes and Noble. Hallmark makes a few, too. I asked family who was there when I wasn’t to play the book for Ethan so he could hear my voice. Some hospitals have special toys with fibers that hold onto your smell if you “wear” the stuffed animal/cloth for awhile. (I think this is especially important for those newborns who are just starting to bond with mommy and daddy.)
10) Be informed on the effects of hospitalization. If your child will be hospitalized for more than a few days, pay attention to how your child is positioned. If your child is staying in the same position, ask your nurse if repositioning is possible. It may not be possible, and in this case, consulting with hospital therapists or outpatient therapists/pediatrician during and after hospitalization may be helpful, especially if your child is young and still is developing head and trunk balance, rolling over, or forming head shape (under 1 yr old.)
Our child seemed to have a preference to only look to the left and roll to the left after his 3 week stay as a newborn at NICU. He now wears a helmet for plagiocephaly (flat spot that can be corrected in the first year) that seems to have been caused by his directional preference. In the NICU, we all visited him on the same side of the bed because that is where you could lift the cords, and that is where the chair was located. This may or may not be able to be prevented, but it is worth asking your child’s treatment team.
11)If your child is hospitalized immediately after birth, don’t delay questions about circumcision, and ask more than one person! We nearly were not able to get our son circumcised because we only asked one person, and there was misunderstanding about when it would be “too late” to get it done. We were told the pediatrician would do this procedure following discharge from the hospital; however, the pediatrician said he would have liked the hospital to handle this since he was so young at that point. For circumcision, younger is better.
There is a certain point that baby boy’s nerves in their penis cannot tolerate circumcisions as well, and our pediatrician would not have done it if our son had not been premature. (Although he was 3 weeks old, he was gestationally younger, so his nerves were still not too sensitive..) The pediatrician told us that he was not willing to put our son under for the procedure because circumcision would not be considered medically necessary, and therefore sedation was an unnecessary risk.
FOR THE FRIENDS/FAMILY
1) It is most helpful to the parents to give a very specific offer: such as “tell me a day I can bring you supper”, “Can I help babysit your older kids? If so, tell me a time you need help..?” If you just say “let me know what I can help with”, that is nice, but it requires the parent to be in an awkward situation of contacting you and asking for help, and it creates more time and mental effort that the parents most likely do not have at the moment.
2) Be sure to feel out the visitors policy and the wishes of the parents before you head up to the hospital. Different parents and different medical situations may call for correspondence only. Having a large volume of visitors may be wearing on the parents and make them feel they are not getting to stay by the bedside enough and are missing the doctors rounding. (Doctors do not always round at predictable times, and this was important for us to attend.) But as I said, find out from a family member of the parents what their wishes are before you head up there.
3) Parents do want support, and you can do this other ways than being there in person if they have asked for no visitors or limited visitors. You can send letters, emails, and facebook posts. You can send snack baskets, balloons, and stuffed animals. If you have a life group/Bible study, etc, coordinating who will notify the larger group would simplify things, and you could even coordinate who will bring what meals on which day.
4) If the parents ask you to not come visit, don’t take it personally. The parents appreciate your support, but they only have so much time to spend with visitors and may not want any at all if things are hectic.
5) Pray for them, and let them know you are praying.
By Natalie aka Ethan’s Mommy