Читать книгу Living with Juvenile Arthritis - Kimberly Poston Miller - Страница 10
ОглавлениеJust when you think you have things figured out, life tends to throw you a curve ball. Juvenile idiopathic arthritis (JIA) has been a game changer for our family. Much the same way many of us define our lives by milestones such as before or after college, marriage, or kids, we now refer to our life in two stages: before and after Grant became ill.
The turning point wasn’t the day we received a firm diagnosis, as you might expect, or the rough patches we endured when Grant was up so many nights in pain. For us, the big event that changed our lives forever, forming a concrete division between now and then, was the first inpatient hospital admission for Grant in February 2010. Evan’s diagnosis two years later was devastating in its own right, but we were already living out a “new normal,” where everything in our lives was framed within the context of JA. Evan’s diagnosis was like another game in our new season, whereas Grant’s first major hospital admission made us realize we were in a completely different league.
Chain Reaction
In the days leading up to the big event, there were many significant changes in Grant’s care. We were working hard to determine what medications could help him finally get some relief. We had changed pediatricians, as recommended 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 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 a good chance it will get stained.
Rest. I realize it’s easier said than done, but rest whenever you can—and don’t feel guilty or indulgent. Schedules are crazy in the hospital, so if you can catch a catnap at the same time as your child, you should. Vital checks, routine monitoring, and medication administration make it hard to snooze more than an hour or two at any time, night or day, and sleep will help give you the mental clarity you need to communicate with the doctors. This small attempt at taking care of yourself is actually an important part of ensuring your child will get the best possible care.
Plan Ahead. Depending on the admission (anticipated for a procedure or an emergency that results in inpatient stay), you may have a few days or just an hour or two to prepare. After our first admission, I had a bag packed and ready to go for each of us, just in case, and kept the “right” snacks stocked in our home so I wasn’t making an extra trip to the store.
Don’t Be Afraid to Ask. Once you’re at the hospital, ask the nurse if she will order the thick pads that resemble egg crates for your chair and your child’s bed. They are usually available, but you have to ask. After getting settled, ask your assigned nurse what other services are available. For instance, do they allow you to check out video game consoles? Do they have DVDs on loan? At children’s hospitals, they usually have a child life activity center, as well as child life specialists who can bring age-appropriate diversions to your child when he or she is feeling well enough.
Don’t Bring Too Many Activities. It may seem counterintuitive, but if you supply every imaginable activity to keep your child occupied, there won’t be anything left for visitors to bring. When friends and relatives ask what to bring, you can recommend activities that your child enjoys, such as crossword puzzles, Sudoku, crafts, or books. This way, your child will feel loved and surprised, and the activities will be spread throughout their stay.
The New Normal
The upheaval we experienced from Grant’s illness spread to all areas of our lives and affected the entire family. Evan no longer had the “homeroom mom” he did before. Caring for Grant and making doctors’ appointments had priority over bake sales and field trips. I saw Evan very little during this period, even though I was still a stay-at-home mom. Thankfully, Grandma helped with homework and picked him up from school while his dad was still at work. Time with my husband also diminished—we rarely even slept in the same room, since he needed to rest for work, and I was up to give Grant his medications every couple of hours. The schedule was almost like having a newborn again.
Because Grant’s immune system was so suppressed due to the medications, we no longer had friends over to the house. We had been warned about exposing him to others who could possibly be ill or carriers of illness. We thought twice about going out for anything but the necessities for the same reason. It felt as though we had become prisoners in our own home.
Nothing was routine anymore, and we all had to adjust. Most parenting websites and books will tell you that children need routines. Even when dealing with a chronic illness (some would say even more so), it’s important to stick to as many daily routines and habits as possible in order to help the child cope with his or her new reality. While I agree with this advice, I learned it doesn’t always work. When there is a flare or a big bump in the road, such as a hospital stay, everything goes out the window! There is no routine. You deal with things as they come.
With many other illnesses, there are defined beginnings and endings, courses of actions and expected outcomes. The autoimmune family of conditions is far less predictable. Just when you think you have a good rhythm going with medication or have established the right balance between rest and activities, something changes, and your child may respond differently each time. It will take time to figure out what works best for your child and your family. Then whatever you found to be “best” will evolve. Being adamant about sticking to one plan or routine that did work will just drive yourself (and others around you) insane! It can be very disconcerting, but there are things you can do to ease the transitions.
MOVING THROUGH THE STAGES OF GRIEF
In many ways, being diagnosed with a chronic illness or having someone you love being diagnosed with one is a death of sorts. Even though the prognosis may be good, it’s the end of the “old” life as you knew it and the beginning of a new, sometimes dramatically different life. In her 1969 work Death and Dying, renowned sociologist Elisabeth Kübler-Ross defined five stages of grief. Although the original intent was related to the feelings faced at the end of life, I believe most parents will see themselves in the model she outlined. The following are my interpretations of the Kübler-Ross stages of grief as they apply to your child being diagnosed with a chronic illness.
Denial—In this stage you don’t want to believe this is your child’s diagnosis. You may think the doctors are wrong, the test results are off, or simply that your child will be one of the first to “grow out of it,” his or her symptoms magically disappearing the same way they appeared. Regardless, you’re not ready to admit that your child may have a serious, incurable condition.
Anger—After the realization hits that your child does in fact have the condition, anger sets in. Why did this have to happen to us? Why him/her? This anger can be manifested in many different ways, toward oneself, toward others, or even God.
Bargaining—Many times the bargaining stage involves offers to a higher power—“if only x will change, I will do y.” It’s a natural way of coping; an attempt to gain some control over a situation that seems devoid of control.
Depression—This is the time when we truly grieve for what has been lost. Feelings of regret, fear, and even hopelessness are common as the reality of the situation sets in. Being depressed is a natural part of the process, but you can’t let yourself stay there.
Acceptance—At this stage some of the emotion is removed and is replaced by practicality. The reality of the diagnosis is accepted, and you begin to form plans and take action. Your focus becomes: “What do we need to do to make our child feel better?” You also learn to make the best of the situation.
Flexibility Is Key
I used to have a fairly fixed schedule. Bedtime was bedtime; breakfast was an hour before we left for school; and so on. We had rules, and we stuck to them. For instance, if you were too sick to go to school, then you were too sick to attend a party after school, end of discussion. All that changed after my children’s JIA diagnoses. Although we try hard not to let JA be a crutch for skipping out on responsibilities, we have learned that some rules need to be reevaluated based on the circumstances. Flexibility is the key. It’s the only way to balance the needs of the whole child and the whole family, while preserving your sanity.
Take after-school events, for example. After several weeks of homebound instruction, Grant was invited to play video games at a friend’s house with a few other boys. The mom was aware of his issues and invited me to stay for coffee while the boys socialized. Grant was still in too much pain to attend even a half day of school, let alone be exposed to so many germs, but he was missing real human interaction with kids his own age. Despite the fact that his teacher didn’t come that day (he was ill from a methotrexate injection, a common chemo drug also used for rheumatology patients), I allowed Grant to visit with his friends. He was feeling better by the afternoon, none of the boys were sick, and he needed that time. I was able to be there in case we had to cut the visit short, and it was a very brief visit by design. Just a few months before, I never would have agreed: He didn’t do his “work,” therefore he didn’t earn his “play.” Those were the old rules, and in our old life, they were good ones! Now, however, rigidly following that rule would prevent Grant from socializing, ever. To complicate matters further, the times when Grant was feeling good didn’t necessarily correspond with the times his friends were free (or free of sniffles!), so coordinating a date when all the appropriate conditions were met would be nearly impossible.
Unfortunately, some parents didn’t understand how Grant could be receiving homebound services, be too ill to go to school, and yet be well enough to attend a birthday party, even if it was for just an hour on the weekend. If I didn’t jump on every opportunity when Grant felt well enough to socialize, he would never be able to attend. Stringently abiding by the rules was less important than preserving the tiny glimpses of joy and friendship in his life. Being flexible helped us to find that balance.
Different Priorities
Although our lives had changed dramatically, and we desperately wanted “the old Grant” back, JA did not define our lives. If anything, it created a paradigm shift in our family. It gave us a newfound appreciation of our old life, and life, period. We learned not to take any day for granted, and we reveled in the small successes. Sleeping through the night, going to school, even for a few hours, walking … things previously overlooked as givens were now cause for celebration.
We developed thicker skins, but at the same time expanded our empathy for others. We had witnessed, firsthand, so much suffering and sorrow. During Grant’s hospital stay, one of the other children on our floor lost their battle. We had met the family in the break room and talked together over coffee. We also heard the crash cart barreling down the hall in the middle of the night and saw the anguish when there was nothing left for the staff to do. This illness suddenly became very real. Hearing of another seriously or chronically ill child hits much closer to home now; and it still creates some very raw emotions, especially for Grant, who, at the tender age of eleven, was faced with his own mortality for the very first time.
At face value, this may all seem very depressing—truthfully, it was a very sad and difficult time. But that is only half the story. Although I would never choose this for my child, it has made our family stronger. It has made Grant stronger. We laugh harder and, of course, cry harder, too. In some ways, we feel much more alive! We have also become more grateful than ever—for Grant being a fighter, for friends and family who have come through for us, and for the simplest of joys. By necessity, we have streamlined our life and, in the process, reevaluated our priorities. We have found support in the most unlikely places and renewed our faith. Although the situation we experienced was quite a challenge (and still is, but on a much lesser scale), I am reminded that the only way coal becomes a diamond is through heat and pressure, squeezing out the impurities to create something even better. How you approach this disease will make a difference in how it affects your family. We didn’t choose JA, but we can choose how to live with it. We’ve decided to let it change us for the better, and so can you.
