by his pediatric rheumatologist, to another great doctor with a little more autoimmune experience. We had exhausted the possibility of other issues causing his pain and inflammation, so we were moving forward from a rheumatology perspective. Our approach was now more focused and deliberate.
We thought everything was progressing in the right direction, albeit slowly, and had no idea what lay ahead. The chain of events triggered by Grant’s reaction to the latest medication changed everything, not just for Grant, but for our entire family. The hospital visit was the catalyst to it all.
Grant had started complaining of nausea, which can be expected with many rheumatology medications. Even though his pain was exponentially better, he started to resist the idea of taking his medication because it made him feel so awful. After a few weeks, we noticed he was developing a strange rash, which resembled sandpaper, on his torso. Things just deteriorated from there. In a matter of days, he was unable to keep down food or liquids, and the sandpaper rash was evolving into bigger, very red bumps. After consulting with the doctor, we decided to withhold his medications, just in case he was having a strange side effect. Honestly, we didn’t think the medication was the culprit since he had been on it without issues for over a month, but we were coming up on a weekend and thought it would be better safe than sorry.
Have you ever noticed that kids seem to get their sickest at the worst possible times? Usually on the weekend or the middle of the night, when the doctors aren’t available? Well, that’s exactly what happened. It was Super Bowl Sunday—a big deal in our house, since not only are my guys avid sports fans, but we also typically know someone who is playing in the game every year! The first huge warning sign that something was very wrong was that Grant was too sick to watch the game, fading in and out of sleep. This was so out of character for him. He had also vomited multiple times, and his lips were starting to become parched and cracked. No matter what I tried to give him—hot drinks, cold beverages, or even ice chips—I couldn’t get him to keep any fluids down. As the day wore on, he started running a fever and became more lethargic. I was getting very concerned, but short of the going to the ER, what could I do on a Sunday? I thought if we could just hold out until the morning, we would squeeze into the doctor’s office again.
Then came the straw that broke the camel’s back: Grant wanted to go to the restroom, but was unable to get there on his own, or urinate when he got there. He was too weak and dehydrated. When I looked at his torso, I saw that the rash was spreading and there was no “white” to be seen. In a matter of just a few hours, he went from appearing “rashy” to looking like he had been scrubbed with a cheese grater. Because his condition had gone downhill at such an alarming rate, I knew I didn’t have another night to spare. So, I grabbed a couple of things and we headed to the emergency room at the children’s hospital.
The Tip of the Iceberg
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
