Living with Juvenile Arthritis. Kimberly Poston Miller
Amazingly, we had only been to the ER with Grant once before. We were always that lucky family that never had anything so catastrophic that it warranted an emergency room visit. Somehow we had always managed to wait for normal business hours to see our regular doctors. The one incident that required an ER visit was the time Grant’s rheumatologist wanted us to bring him in for STAT blood work during an especially bad flare. (Remember how I said kids always get sick at the worst times? Well, that happened over a three-day weekend!) Due to my inexperience with the ER, I was surprised at how long it took to get any treatment. It was crowded, and since Grant wasn’t actively bleeding and there were no bones protruding from his body, we had to wait.
One of the things I have learned about all autoimmune diseases, including JA, is that things can look fairly good on the outside, but tell a completely different story on the inside. Often what you see is just the tip of the iceberg. By the time we were seen by a doctor, the only unaffected skin on Grant’s body was a sliver the size of an almond under his chin. Even then, I naively thought he would get some type of IV drugs to help with the reaction, as well as to rehydrate him, and then we would go home to ride it out. Unfortunately, the nightmare was just beginning.
Since we were at a teaching hospital, the ER had a number of residents who saw Grant before he was examined by a regular staff doctor. New doctors, coupled with an environment that is more suited to trauma than complicated medical histories, further delayed treatment. At one point, Grant started having difficulty breathing, which escalated the situation. When the attending physician finally came in, he took one look at him and informed us that Grant would be admitted to the hospital that evening and reevaluated for release the next day.
One day turned into two, and two turned into seven. After a brief two-day respite at home, Grant was readmitted to the hospital for a total stay of ten days. Early in our stay, two residents came into Grant’s room in the middle of the night when they thought we were sleeping. As they performed the normal vital checks, I overheard them speaking in hushed tones; they said Grant was a very sick young man and gave him a 50-50 chance of “making it.” I couldn’t believe what I was hearing! The JIA, along with the medications, had started a domino effect of serious conditions, including non-viral hepatitis and DRESS (Drug Reaction with Eosinophilia and Systemic Symptoms) syndrome. To my horror, the possibility of Stevens-Johnson syndrome (a life-threatening skin condition) and potential liver failure was mentioned several times.
Without warning, everything had been turned upside down—and it changed all of us. Grant’s battle for survival altered our lives irrevocably. Everything that happened from this hospital admission on has become our “new normal,” a completely different life than we had before.
Although Grant’s condition improved and he was eventually released from the hospital, he was still very sick. As a condition of our release, Grant had blood draws every other day to monitor his liver. Our new life was filled with regular hospital visits and admissions, frequent lab work, multiple therapies, medications, and doctors’ appointments. There was very little room in the schedule for school, and most of the time, he was too weak or sick to go anyway. We had gone from seeing our son play football and recover from the exertion in a day or two to barely walking unassisted and struggling for his life in a span of just three months. The changes were huge, and they weren’t restricted to just Grant … everything was different.
HOSPITAL TIPS
I won’t lie: a week in the hospital feels like a month. However, there are some things you can do to make your hospital stay a little easier.
Pack Light, But Smart. There is next to no space for anything personal, especially luggage, so just bring a small duffel bag. Depending on the procedures and the hospital, your child may be able to wear their own pajamas, but you will still need something that offers easy access to their chest for exams and their arms for IVs. Make sure it’s not a favorite pair of pj’s, as there is always a chance of stains. Always have an extra pair on hand in case he or she has an accident (accidental urination is a common side effect of steroids) and needs to change clothes. For yourself, make sure you have regular clothes you can easily sleep in and not look overly rumpled the next morning. I had a couple of cute velour track suits that fit the bill. Leggings and a big cotton sweater or shirt are also good bets. You may be up every two hours or so during the night, and there are lots of people running in and out at all hours, so pajamas aren’t really practical. Make sure to bring flip-flops (shower shoes) in case you get a chance to use the parent shower. They are also convenient to slip on when you have to pop out of your chair to get something for your child. Make sure your child also has slippers (a big improvement over the ugly hospital “grippy” socks). You can be barefoot in bed, but must have your feet covered out of bed.
Pack a Spare Bag to Leave at Home. When you need new clothes, having a bag already packed makes it easier for the other parent or helpful relative/friend to swap bags, and then wash and replace what was in the old bag for the next go-around. Be sure to include some snacks.
Bring Food for You! Let’s face it, the food options at most hospitals leave much to be desired and can be expensive. Since the staff must monitor the calorie intake for patients, nibbling on your child’s leftovers is not an option. Bringing your own snacks is the best bet. And since beverage machines aren’t always conveniently located, I started bringing a lunchbox-sized soft-sided cooler: I would buy several drinks at a time and keep the extras in the room. Having your own food and drinks is also handy when you’re hungry or thirsty in the middle of the night. Check with the hospital before bringing anything with nuts, due to allergies. Also, having gum or mints is a good idea, especially when the doctor wants to talk to you at 3:00 a.m.!
Take a Pen and Notepad. Write everything down—you will thank me later. Whenever they put something in the IV, ask what it is and when it will be needed next. Write it down and note the time, plus the time it will be needed again. With painkillers, it’s very important not to lapse for the first couple days; it’s hard to get back to a good spot if they run out. The nurses are overworked and will sometimes run late. If they say 4–6 hours, buzz them and remind them at hour five, which allows plenty of time to requisition the pharmacy and work your child into their regular rounds. Writing information down is also a good way to catch errors; the staff is only human and has many patients. You only have one patient to track. I have caught errors this way, and most of the other parents I have spoken with concur. Additionally, if you write everything down, you won’t have to ask the same questions over and over. You will receive a lot of information, and eventually it all starts to blend together. If you write it down, you can revisit it. Also, jot down your questions for the doctor when you think of them. Believe me, you’ll have a long list of questions in middle of the night and won’t remember a single one when the doctor arrives for his morning rounds!
Bring Headphones and Other Gadgets. Headphones can be a lifesaver for both you and your child. If your child has a roommate who cries or screams (as many younger patients do), it can be very unnerving. We passed the time watching movies on my laptop and using our iPods. We also watched an entire television series on DVD (a series can really make the time fly by). The hospital television does no good if your child’s roommate is having visitors or watching something else. If your child is old enough, you may consider allowing them to have a Facebook account so they can keep in touch with friends. For Grant, this was a social lifeline! He could chat with friends in real time, and I was there to supervise. Also, keep in mind that if you have a young child in the room, the nurses will turn off the room lights early, so bring a book light if you plan to read.
Bring a Pillowcase and Blanket. Hospital linens are typically scratchy. And besides, a colorful pillowcase from home is much more cheery. It’s amazing how such a small comfort can make such a big difference. You will also need your own pillow, and both you and your child will want a twin-size blanket or throw. I prefer fleece because it’s warm and washes up easily. Sure, the hospital has blankets but, again, they are usually thin and scratchy, and sometimes the only thing they provide parents is a sheet. After a few days, this little added comfort will make your stay ten times better. Of course, don’t bring anything too expensive or that your child loves, because there’s