Note: Heather is a regular contributor t0 Born Just Right and shares her experience as a mom of a little girl with mitochondrial disease.
Lindsey just finished up her 8th and 9th hospital admission since the age of 14 months (so two years ago). We have had planned and unplanned admissions, but they keep getting closer together and less planned. Half of her admissions have been in the past nine months (three of which were unplanned). The admissions have ranged from one to seven days. During this last stay (a seven day one), I was thinking of ways to make things easier, both on her and on me. So here is a list I came up with.
1. Make it personal. If you can, bring along your child’s favorite toy/lovey. If you have a child who you know will be having multiple stays and many appointments, you might want to make a stuffed animal or doll that is their friend to bring along. The “friend” can be weighed, have their heart checked, etc. Lindsey has a doll with a feeding tube and we bring it with us so that the doll can get feeds and IV’s just like Lindsey. If you are good a sewing or know someone who is, there are free patterns online to make your own hospital gowns. I had a friend make some girly gowns for Lindsey, and she loves them. It is a fun and special thing from home for her.
2. Make it special. Have a treat for your child to look forward to. For us, my kids don’t usually watch any tv or movies at home, so I let Lindsey watch as many movies as she wants while she is in the hospital. We watched “The Princess and the Frog” one thousand times during this past stay.
3. Ask questions. It is always always always ok to ask questions to your child’s doctors and nurses and anyone else involved in your child’s care. Don’t ever feel bad about asking questions, even if you feel there might too many questions or if you’re asking what you think might be silly questions. By learning about your child’s care and being involved, you will be a better parent and better able to understand what is going on and how to help your child and make decisions.
4. Use hospital resources. If your hospital has a Child Life department, use them! They are invaluable resources in knowing how to make your child comfortable, easing their fears, and finding creative ways to keep them happy.
5. Stick to your routines. As hard as it is, try to stick to your child’s schedule as best you can. Even if they won’t nap, try to get them the rest during their usual naptime. We rested by watching movies with the lights off. If the nurse doesn’t ask, make sure to mention your child’s normal bedtime and the time they generally wake up in the morning.
6. Take care of yourself! You cannot take care of your child if you are not doing well yourself. I have never left Lindsey alone at the hospital at night. Either me or my husband has stayed with her. This time, I left her. It was really hard, but she did great. I needed to get a good sleep and be refreshed for the days ahead. If you have to stay with your child (and that is ok too!) then do other things to make sure you are getting breaks. Go get a cup of coffee, walk the hallways for exercise, get a pass to take your child off of the floor and explore another part of the hospital. Have a friend come to sit with you for a couple of hours. Whatever provides a bit of relief.
7. Document the experience. It is ok to take pictures of your child. I struggled with this at first, but realized, that for us, this is a big part of Lindsey’s life, and I don’t want to not have pictures for her to look back at. I don’t take pictures of her crying or in pain, but I do take pictures of her new tubes, her having fun in her crib, her sleeping, in the playroom, etc.
8. Make a list of questions. I always forget what I want to ask the doctors or nurses about, so I keep a piece of paper and pen so that when questions pop into my head, I just write them down. I also keep a running list of questions at home in between doctor appointments.
9. Keep a bag packed. Remember when you were pregnant and had a bag packed for the big day? I now have a bag packed that I can just pick up and run with. It has clothes for at least one night’s stay, Lindsey’s gowns, some snacks and tea, and bathroom items. I also have a list of the last minute items I would need to throw in the bag. That way I am not furiously packing at the last minute while worrying about Lindsey and how fast we can get to the hospital. I inevitably forget something during the mad rush because I didn’t think of it. Now I have most of the essentials ready to go! As a planner, this does actually help ease my stress.
We are home now, and starting a new normal. Lindsey had surgery to place a central line during this past stay, as she is very hard to access for IV’s and blood draws. We also can now do IV fluids at home when she cannot get in her entire tube feed for the day…the feeding intolerance is usually why she ends up in the hospital. So now we get to deal with a lot more medical supplies (her supplies used to share a closet with our linens, but this past week the linens got kicked out) and a home health nurse. I never know when the next crisis will occur, but the more prepared I feel, the easier it is to deal with.
Lindsey has taught me that it is useless to plan ahead. We might as well just live day to day, and to be honest, it is better to live that way than to be constantly planning for the future anyway!
Heather is the busy mom of two girls. Catherine was born in 2006 and Lindsey was born in 2008. She tries to blog about life at Staying Hopeful, although sometimes life gets in the way! Heather is a New England girl (and proud of it!) living in Virginia, and is married to Ross. When she has free time (haha) she likes to sew, read, and take long walks.