Lauren hasn’t been in the hospital in about ten years. Her needs have changed since then and hospitals have changed as well. The once taboo cell phone can now be a lifeline to family and friends with all the numbers already at your fingertips. The hospital we were just in has wireless. If you have a laptop you can work, email, search for information and resources, or just amuse yourself while you’re spending endless bedside hours. And, in this new age of “hospitalists”, your primary care physician will not be seeing you. You will be seen daily, and sometimes more often than that, by hospitalists, who practice solely in the hospital setting.
I’m sure parents whose children have frequent hospital stays could write this much better than I could. But for those of you for whom hospital stays with your child are the exception rather than the rule, I thought I would share some thoughts and ideas that might make a hospital stay with your loved one with a developmental disability a bit more survivable:
- If at all appropriate, ask that your child be put in pediatrics regardless of their age. You are more likely to be able to get a single patient room and the nursing is more appropriate for an individual that ordinarily requires more physical or specialized care than a typical person. They will have videos and games with which to entertain your child and there are other perks such as visits by animals and musicians. (We spent some time with a walking harpist. She mentioned that some people want her to stay away from them and consider her a bad omen. I guess she reminds them of harp-playing angels. Interesting.)
- You may want to request that the admitting doctor include in his orders that your child can take their own medication. There are two reasons for this. One, it may not seem possible, but the hospital pharmacy may not have the particular medication or form of medication that your child needs. Two, you will want to maintain the schedule that your child usually follows in taking medication and that may not be the hospital’s schedule. Bring their medication in the original bottles or packaging and make sure that the nursing staff is aware that your child will be taking medication brought from home.
- Some other things to bring: Diapers – if your child uses incontinence products bring some with you. You don’t want to deal with the too big, too small, etc., etc., that the hospital will provide. Bring food – if your child likes to eat particular things, especially snacks, bring some with you. If they’re not feeling well they will be more likely to eat something familiar to them. (In pediatrics, they usually have a refrigerator where you can store labeled and dated items) If they like to use specific cups, cutlery, need a bib, etc. bring those as well.
- More about food – You’ll be given a menu on which to circle food choices for your child’s meals. Order more than your child wants. Only about half of what I ordered for Lauren was provided as I ordered it (pureed vegetable rather than whole, regular pudding rather than sugar-free pudding, and so on). If you’ve ordered more, you’ll have a better chance of having enough that your child will eat. If the wrong type or form of food becomes a problem, ask to speak with the dietitian yourself and you will probably find it very helpful.
- Consider taking a proactive step in case your child is ever admitted without warning. Write a basic history of your child’s health – diagnosis, hospitalizations, major illnesses, an explanation of their disorder if it’s a rare one, seizure history, major tests and their results, and anything you think would help medical personnel treat your child who they have never seen before. Make several copies of this and keep them in an accessible spot in case you need to run in a hurry. Include with the copies a blank piece of paper. When you can (I wrote mine in the car on the way to the hospital) write out the precipitating events and details that resulted in this current trip to the hospital. You will be repeating this information many times. If it’s written down, all medical personnel will have the same information and you won’t be kicking yourself for forgetting to tell someone some important point, because you were upset and not thinking as clearly as usual.
In addition, you'll need to take care of yourself. I know, easier said than done, but here are few hints that may help.
- Create a stash of food for yourself – granola bars, your favorite tea, cans of soup, crackers, fruit. I left Lauren alone for all of about ninety seconds once and she pulled out her IV. So, I couldn’t run down to the coffee shop or anywhere else to get food. You may not feel like eating but you have to. I could, however, get the nurse to stay with her for five minutes while I ran down the hall to the little kitchen and heated some soup in the microwave or made a quick cup of tea. And, if someone tells you they’re coming to visit – order food.
- Don’t sleep in your clothes. You may not think you’ll care but take some sweats or a pair of pajamas to sleep in. You’ll be more comfortable and feel more refreshed in the morning when you get dressed in regular clothes again.
- Make sure to take the vitamins and other medications that you normally take. Also, keep a bottle of Ibuprofen with you. You’re going to be sleeping on a pull-out something or other that is going to be a narrow, lumpy, squeaky excuse for a bed. You’re going to be achy, tired, and probably between the stress and the fatigue, headachy.
- If you don’t already know how – learn to do a mass text on your cell phone. People will invariably call to check on you when you’re changing a diaper, talking to a doctor, or feeding your child. Sending out mass text messages once or twice a day will keep untimely calls at bay while still keeping friends and family informed.
- Bring something to do – it will make time pass more quickly. Television will only keep you occupied for so long. Consider bringing your laptop, a book or magazine, knitting, a book of crossword puzzles, or anything that will take your mind off things for a bit.
I’m sure I would have learned a lot more had Lauren’s stay been longer, but thankfully, we were home on the evening of the sixth day. She is doing well now and seems completely recovered. And, in case you’ve been following my recent tale of displeasure with the medical care Lauren received prior to her hospitalization – I am happy to share with you that she now has a new doctor.