Consequences

For every action, there is an equal and opposite reaction. -Sir Isaac Newton, Newton’s Third Law of Physics

Today, class, we’re going to talk about physics. Okay, no, not really – we’re going to talk about microbiology as it pertains to one unique person’s physiology. Specifically, Gracie.

In a perfect world, no members of Gracie’s carefully selected care team would ever require replacement. Once selected, these people would devote the rest of their lives to helping Grace thrive.

This is not a perfect world.

We have lost doctors, therapists, and helpers through the years. Some of those losses are more painful than others – sometimes, it is a relief to stop seeing a provider who can’t believe it’s possible for Grace not to feel pain or won’t offer us any further help. Other times, it’s very sad to lose people we have come to rely on.

One of those people was Grace’s beloved school helper, Miss K. Miss K. was Gracie’s 1:1 at school for two years in a row, and she also nannied for us during the summer between those two years. Miss K. is a part of our family – I think of her as the little sister I’ve never had, and Grace absolutely adores her. We all adore her. Miss K. was working as Gracie’s 1:1 while she completed a master’s degree in special education with focus on becoming a teacher of the visually impaired. After two years of working full-time as Grace’s helper while studying, Miss K. needed to obtain a job in her field, and none were available in the Denver area. We were all devastated when she moved to the west coast, but it was the best move for her, and we are happy to support her in everything she does. We are happy for her – but sad for us. Saying good-bye to Miss K. was like losing a family member. She will always be a part of our family, though, and we will always love her as such.

It became painfully clear at the beginning of this school year just how much we relied on Miss K. We are now training a new helper, and while I think the new helper is a good person who has Grace’s best interest in mind, she is not Miss K. She doesn’t know Grace like Miss K. does, and she doesn’t understand how seemingly insignificant things can explode into full-blown, hospital-stay-requiring infections practically overnight.

Part of it is my fault. I was complacent with Miss K., and hadn’t needed to train her to do anything for quite some time. Now that she’s gone, I barely know where to begin to explain things to the new helper. I’m not sure she gets the gravity of the situation. I’m not sure if she knows that I’m not just being picky about wound care – little things can become life-or-death situations for Grace. And it shows – Grace has already had one ER visit this school year, and there is something not right with her right now. I’m waiting for it to blossom into something we can treat, but for now I know she is not well.

And that brings us to the second care provider we are training – the infectious disease specialist. After the incident with Dr. PC this June, we have switched care to his associate, Dr. S. She is nice, but she does not understand the complexity of caring for Grace. And unfortunately, the only way she’s really going to get it is for Grace to suffer some serious consequences. It is already starting; the finger infection that sent us to the ER on the day of Grace’s mermaid swimming party is flaring up again, and the hard lump of infection under Grace’s knee never went away after the hospital stay this past summer. Either one of these infections could explode overnight and cause her to have another extended hospital stay.

There is definitely something going on with Grace. She says she doesn’t feel well, she says her tummy hurts, she’s not sleeping well, and she’s had diarrhea. The finger that sent us to the ER is turning red again, and Grace even jumped when I palpated it a few nights ago – she said it “tickled,” which is a word people who don’t feel pain use to describe something that would hurt the rest of us.  I emailed Dr. S. with a picture to let her know about the redness and “tickling,” but I haven’t heard back. I can’t help but imagine that she does not think this is as serious as I think it is. After all, she is used to typical kids – not amazingly unique ones like Grace.

There will be consequences to Dr. S.’s lack of concern, and unfortunately they will be suffered by Grace. There will be consequences to having a new 1:1 at school – these, too, will be felt by Grace. She is the one who will face the consequences. I can only hope she will get through it relatively unscathed, and the new providers will learn a serious lesson about who this little child really is.

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Unfair

Humans have an internal compass for justice—at least, most of us do. We learn as young children to abhor injustice. As we mature, we learn the unpleasant truth that things sometimes are deeply unjust and beyond our control.

Gracie rarely minds her disabilities. Although she’s well aware that she doesn’t feel pain, she doesn’t really care that she’s different. She’s indifferent to her differences. Today, though, the harsh injustice of it all broke her heart. (For a little while, anyway. She’s okay now.)

This summer, we spent a lot of time in swimming pools. Jackson learned a rough doggie paddle, and Grace learned to blow bubbles—that is HUGE; we have never been successful in teaching her how to blow her nose or otherwise exhale. (Turns out it’s related to not feeling pain, because several other of the painless kids have learned very late how to blow their noses, too.) The kids’ progress in the pool this summer highlighted for me that they really have very few basic water survival skills. I decided to sign them both up for swimming lessons. Today was to be the first lesson.

We really have not allowed Gracie into pools very much. She basically always has wounds in various stages of healing all over her body, and because of her weak immune system, I worry (A LOT) about the germs in swimming pools. Even Jackson has gotten infections from swimming in public pools; I shudder to think about Grace in there. So, of course, Gracie LOVES the water. Murphy’s Law, or something. Recently, she has become obsessed with mermaids. She is dying for a Fin Fun Mermaid Tail—it’s the one thing she still hopes for in her heart, even knowing she’ll never get it.

Gracie just turned 7, and for her birthday she wanted a mermaid swimming party. She wanted one last year, too, but was not allowed to have one because of the cast on her arm. This year, I had no excuse. I reserved a room at our local indoor swimming facility and invited all her friends. The party was last Sunday at 10 a.m. We were picking up a friend, and planned to leave our house at 9 in order to get there early and hold some tables. At 8:30, we were getting ready, and I noticed redness and streaking in her right hand from an infected wound. Fuck. Streaking = hospital stay.

For a few minutes, I stood in our kitchen, debating whether to cancel the party and take her to the ER or do the party first, then the ER. Eventually, reason kicked in, and I took Gracie’s temperature. It was normal – we’d do the party first.

The injustice of it all really struck me on that Sunday morning. Why can’t she just have a freaking birthday party, for crying out loud? Why can we never make plans? Why does her disease have to ruin everything? It’s not fair, it’s SO not fair.

Gracie was worried for a moment that I wouldn’t let her go to her party, but once I said she could go she was elated again. She was so excited to see all her friends and have fun in the pool. I wrapped up her wounds and taped a plastic glove on her hand to hold the bandage in place and try to keep the pool water off the wound.

Gracie had a blast at the pool. She pretended to be a mermaid in the kiddie pool, which is actually a huge water playground with a beach entrance and a concrete bottom. She slid across the bottom, pretending she was wearing her beloved Fin Fun tail and having a great time. Unfortunately, sliding across concrete isn’t a great idea even for people who feel pain, and it’s a recipe for disaster for kids who don’t feel pain. She tore huge lesions into her feet, ankles, knees, and knuckles.

After her party, Grace and I dutifully trudged to the hospital. Her finger was swollen, red, and streaking. However, she did not have a fever. After consulting with the infectious disease specialist, the ER doctor decided not to admit Grace and sent us home with a prescription for oral antibiotics. Whew! That was a bit of grace, so to speak.

The antibiotics kicked the finger infection fairly quickly. It’s a good thing she had them for her feet, though; the wounds were so deep and so large that they would have been certain to become infected if she were not already on antibiotics. It’s been almost the full ten days already, and her left foot is still raw. So raw, in fact, that I’m starting to panic about her stopping the antibiotics. I’ve been calling and emailing doctors to see if they’ll extend the prescription. We are going to see infectious disease tomorrow, and I can only hope she’ll re-prescribe the meds. Most doctors won’t do that; we’ll see how it goes.

Anyway, back to swimming lessons. Tonight was to be Grace’s first-ever swimming lesson, but the wounds on her feet are too severe—I can’t allow her in the pool, at least not until I talk to the doctor about it. It’s terrible. WHY does her disease have to ruin everything?! Even worse, though, was that Jackson was able to do the lesson. She had to sit there at the side of the pool while he got to swim. It was awful, heart-wrenching, TERRIBLE. She basically threw a 45-minute tantrum in front of all the other moms and kids; I couldn’t blame her, but it was terrible.

Normally, her disease doesn’t bother her much, but tonight, it was awful. She was crying, “WHY does it matter if I can’t feel pain – I can still go in the pool!” I told her that not feeling pain wasn’t really the issue, it was the possibility of infection. But for a determined little girl, those words were empty. All she wanted was to hear me say it was okay, she could go in the water. I couldn’t. I couldn’t let her, couldn’t risk her health just for one day of fun.

The next swimming lesson is on Thursday, and she’ll have to sit that one out, too, unless her wounds miraculously heal over in the next two days. (Unlikely!) Chad is on deck for this one; he will have to deal with the repercussions. He will have to soothe her, even when she behaves terribly, will have to help her work through the injustice of it all.

It is unjust. It’s not at all fair. And there’s no way to make it right.

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To Care or Not To Care

Hot Chocolate Banner

Gracie and Jackson and I did a couple of 5Ks last spring. Although Gracie wanted to participate, she is not physically capable of walking that far, so we would take her stroller and she would ride in the stroller when she got tired (or when I decided she was too wobbly to walk on her own). We all had fun.

There is another race coming up in October that I’ve been hearing about for a few years, the Hot Chocolate 5K/15K. It sounds like a fun race, and all the participants get cocoa at the end. I went to their website today to register the family, but saw many notices that strollers are not allowed. Since we cannot do the race if Gracie isn’t in her stroller, I emailed the race organizers about whether there is an exception for people with disabilities. This was their response:

Typically we schedule an early start for our wheel chair athletes or participants in a stroller that are being pushed the entire time. I will have to check with our operations team.

Two things struck me: athletes with disabilities are not integrated into the general crowd, and they must stay in their wheelchairs the entire time. This bothered me; not everyone in a wheelchair is incapable of walking, and why aren’t they just integrated with the rest of the runners? I emailed back to express my concerns.

Not too long after that, I received a second email:

I’m sorry… I think there was a misunderstanding. We welcome and are joyed to have athletes of all abilities in our races. We have lots of organizations and athletes with disabilities and visual impairments that participate in our races nationwide. I was just trying to figure out if an early start would be the best fit for your family or if you would prefer to start in back.

Please register and join us for a memorable experience! We will figure out the logistics.

Sounds good, right? I probably should have let it go at this, but I was concerned that if I registered and showed up on race day with a stroller they would turn us away. This was my response:

I am concerned about the race policy of no strollers. I don’t want to register, get to the starting gate with my daughter in her stroller, and be told that we can’t participate because she is in a stroller. I am also concerned about this – “Typically we schedule an early start for our wheel chair athletes or participants in a stroller that are being pushed the entire time.” That language makes it sound like disabled athletes are discriminated against because they have to have a different start time and have to be in their wheelchairs the entire time. Not all disabilities are the same, and not all people in wheelchairs are there because they can’t walk at all.

How can we fix this? How can we ensure that she will be welcomed, even if she doesn’t “look” disabled? How can we make it work so that I am sure we will not be turned away at the gate?

She didn’t like my email.

It was a while before she responded again, and the next response was defensive.

We simply cannot and do not allow strollers for any of our Hot Chocolate races which we have in 18 cities. This really has not been an issue for us.* The general public knows and is understanding that this is our standard policy .This is purely because of the safety of all of our participants which is a contract worked out between our race director and city officials. There are areas on the course that can become a safety hazard if we were to allow strollers.** The terrain and elevations of the course are also a factor. If we were to allow strollers, come race day we would not able to control that number and that would put the safety of our participants in  jeopardy as this can create congestion on the course. We produce other races locally in which strollers are welcomed, sadly it just not feasible for our Hot Chocolate Race Series.

“Typically we schedule an early start for our wheel chair athletes or participants in a stroller that are being pushed the entire time.” That language makes it sound like disabled athletes are discriminated against because they have to have a different start time and have to be in their wheelchairs the entire time. Not all disabilities are the same, and not all people in wheelchairs are there because they can’t walk at all.

We absolutely do not discriminate against disabled athletes. This is standard protocol for athletes in wheel chairs or strollers. I have had nothing but positive feedback from all of the organization that I work with directly to arrange their logistics and early start times in various cities. All race directors and major race production companies operate this manner, I assure you. These organizations and athletes  actually welcome the early start and always have a fantastic time! I worked with a super awesome group called Ainsley’s  Angels in Tampa that had a blast and were set up to participate in this manner (see attachment).

The solution:
Register and I can arrange for you all to be in the early start. This is the only way for you to be allowed on the course with a stroller.*** If she wants to run portions of the race, she can absolutely do that, you all will just need to move to the side when the rest of the race starts. These are standard instructions for our groups that start early.

Let me know what you decide and I would be happy to work with all and communicate all logistics to our team.

Day-um.

Obviously, she didn’t like that I pointed out how this seemed discriminatory. She did not want to hear how her response sounded to me. Instead of being accommodating, she immediately closed off and decided that we either are going to follow her rules or not run at all.

This scenario isn’t actually new. Every parent of a child with disabilities encounters some similar scenario at some point; most of us experience it with alarming frequency. I don’t know why I chose to fight this particular battle. Maybe it’s because Gracie has been sick with mystery fevers for several days and I’m very tired and worried. Maybe it’s because Chad chose today of all days to debate politics with me. Maybe it’s because I want the best for my child and I don’t want her to be discriminated against. Maybe it’s all of those things.

But now, I have a dilemma. Gracie would actually LOVE the Hot Chocolate race and even has heard some of her teachers talking about it before. She wants to do it. It’s not that much of a hardship to have an early start, even if it does separate the regular athletes from the disabled ones. But it’s the principle of the thing. How can I support the race when they responded with such coldness?

In general, it’s easier to avoid situations where people with disabilities aren’t welcome. Companies have a way of making sure you know they don’t want you. We learned that lesson for the first time at Anchor Center. When a company doesn’t want to accommodate, they will make it nearly impossible for you to stay.

But for the bigger cause, for the disability community at large, it might be worth sucking up my pride and trying to make it work. Maybe it’s better to try this with another gentle reminder that this is not inclusive, and show how easy it really is to accommodate.

What would you do, friends? Suck it up for the good of the cause, or avoid the race on principle? Please comment—guidance is appreciated. Thanks, all of you.

 

*Just because no one has ever complained before doesn’t mean it’s not an issue.

**I checked out the race course. It’s through the city streets of Downtown Denver. There are no hills, and the only obstacle would be construction (if there is any). There is no reason why people can’t have strollers, at least not in this city.

***This is the one that really got me. “My way or the highway, beeyatch!”

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Honeymoon

Chad and I have never had a honeymoon. In fact, we’ve never even had a child-free overnight in the 9+ years we’ve been married. Jackson was born before our wedding—he was a 5-month-old chubby-cheeked baby in our wedding photos—so we did not want to leave baby him behind and go on vacation after the wedding. (Also, babies are kinda expensive, and a honeymoon seems like a luxury when you’re scraping funds together for daycare, diapers, etc.)

Then, Gracie was born when Jackson was 2, and our lives became much more difficult. There has never been a time in her life when she was healthy, not even when she was in utero. Health crisis after health crisis has plagued her throughout her entire life. Childcare became harder and harder to find—thank goodness our daycare provider also has a special needs child, or she would have run screaming much sooner—and overnight childcare was impossible. Between the constant wounds and infections and Gracie’s natural hyperactivity, there was no chance of finding anyone who would take care of the kids overnight. Truthfully, it would have been stressful for me to leave her in someone else’s care, also—we don’t have close family in town, and there’s no one else I could have entrusted her to.

Gracie is a little older now, and we are better at managing her condition. She is still hyperactive, and she still doesn’t feel pain, and she’s not potty trained in the traditional sense, but she’s not biting fingertips off anymore, and she’s better able to self-report if she sees herself bleeding. Progress.

We still have trouble finding summer childcare for Grace. Jackson is able to go to day camps, but she is not. She isn’t independent in the bathroom, which is a requirement for every camp or daycare for kids her age. Plus, she isn’t safe—she needs to have an adult keeping an eye on her in order to not break bones or sustain other serious injuries. Those day camps are staffed by teenagers at a ratio of 15-20 kids per one young adult; there’s no way she would be watched carefully there. And there are day programs for special needs kids, but Jackson couldn’t go (yes, that’s a requirement for me—I want my kids to spend the summers together), and also usually she’s the only person there with normal cognition—most people with disabilities as severe as hers also have cognitive impairment. She doesn’t really fit in, and the staffers usually don’t know what to do with her (strange but true—even in the special needs community she is an anomaly, and many people are afraid of working with her). This leaves us with nannying as our only summer childcare option.

I started reaching out to people in early spring to see if anyone was interested in nannying for us this summer. I posted on listservs for parents of special needs kiddos, reached out to our former daycare person, asked the SPED teachers at Gracie’s old preschool, and talked to folks at the kids’ current elementary school. No one replied. I started to panic as the school year neared its end and doubled-down on my efforts, but it was in vain—we were unsuccessful at finding a summer nanny.

Luckily, Chad works out of the house, and I am able to work from home sometimes, so we decided to split days and take care of the kids at home during the summer. It wasn’t a perfect plan but it would have worked; the kids would have a boring summer, but hey, didn’t we all have those as kids? At least they would be together.

But then, my parents volunteered to visit Colorado for the summer and provide childcare. Hallelujah! I would be able to work in the office during the summer. Chad would be able to do deliveries during the day. We could breathe easy, knowing the kids were in my parents’ very capable hands. It was wonderful. We got an even better surprise, though, when they offered to allow Chad to join me at my work conference in Vail. After 9+ years of marriage, we are finally able to have a child-free overnight together. It may not be a traditional honeymoon, but it’s the best we’ve ever had. What a gift—we are so grateful for this opportunity.

So tonight, if our hotel room’s a-rockin’, don’t come a-knockin’—we are on our long-overdue honeymoon. ❤

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Hungover

I have used the term “hospital hangover” before. It’s a feeling of being worn down, a little depressed, completely frazzled, and unreasonably exhausted. It takes days to shake the hangover after a hospital stay. The longer and more stressful the stay, the worse the hangover.

Having a sick child is incredibly stressful. It is terrible to know your child is very, very sick and be unable to help. When Gracie was in the hospital last week, she was very, very sick. She spent the first three days of our hospital stay experiencing high fevers that made her miserable. Even though she doesn’t feel pain in the normal sense, she aches when she’s fevering. She says her neck hurts, her arms hurt, her legs hurt, her feet hurt, even her eyes hurt. These descriptions of the body aches that accompany fevers are familiar to us all. Additionally, she moans and writhes while the fever is climbing. I know now to medicate her as soon as she starts moaning, but there is still usually at least an hour of moaning and writhing uncomfortably before the fever spikes and she stops moaning. This is the hardest hour—for both of us. I hold her and comfort her as best I can while she moans and writhes, but there is nothing I can do to really help. It takes longer for the medicine to take effect than for the fever to climb, so unfortunately she must spend an uncomfortable hour aching and writhing before she gets any relief at all.

It hurts my heart to see her like that. It is scary and stressful and horrible, and there is nothing I can do to make it better for her. Then, there is the knowledge that these rigors (a/k/a fever shakes) indicate a severe infection—how bad is it? How long will it take to get the infection under control? Will she get through it and be okay on the other side?

In the case of this most recent infection, it took three days of the wrong medication, arguing with doctors, and an eventual switch to a stronger antibiotic before the fevers subsided. This adds the worry of whether the infection will worsen until it’s out of control, and the worry of how to get my child the care she needs when the doctors won’t listen.

It’s all very stressful.

Days of a flight-or-fight response, a/k/a the stress of having a kid in the hospital, leave a mark. THAT is the hospital hangover. I am one frayed nerve away from completely losing it. I could use a vacation, except it was cancelled so we could stay in the hospital. I could use a hug from my guru, Amma, except apparently she didn’t want to see me this year. (At least, that’s how it feels.) I could use at least a day off work, but instead of getting a break I’m working extra to make up for time out of the office, and taking lots of flak from people who don’t realize how very fragile I feel. They have no idea that one snarky comment could send me over the edge.

This all sounds like a lot of whining, and for that I am sorry. It should be about Gracie, and it is, but it’s about all of us, too. After the heat of the moment passes, the emotions hit. When we are in the fire we simply act—we get through the flames as best we can. But the embers smolder still after the flames subside. The emotions continue to burn even though her physical problems are under control. In fact, the emotional damage only flares after the fact. THAT is the hospital hangover.

Gracie is doing better now. Her knee is still warm but not hot. There is still some swelling, but the redness is gone. The medicine is working. The fiery fevers are long gone; she has not had a fever since she switched medicines. The crisis is over; the flames have been put out.

And now is the time that our emotional damage surfaces. This is the hospital hangover. Like a traditional hangover, it won’t last forever, but it sure is hard to deal with when we’re in the throes of it all.

So, if you see me or Chad, say a kind word. Save your complaints about our work product until next week. Understand that we’ll get through this, but for now, we’re fragile. We’re hungover.

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The White Prison

It’s hard to make plans when you have a special needs child. Their diseases are not predictable, so any vacation/date night/concert plans have to be tentative until they actually begin. Many times over these 6+ years, we have had to cancel plans because Gracie was in the hospital or very, very sick. It can be extremely frustrating for all of us.

We don’t have a lot of vacation plans for this summer, but we had a flurry of activity planned for the beginning of June. Chad makes a yearly service trip to the Pine Ridge Indian Reservation in South Dakota, where he works 18 hour days making dentures and other dental appliances for the people who live on the reservation. I was scheduled to represent my company’s publications department at a legal education conference in Vail. Of course, these two trips overlapped, so I agreed to take the kids (it’s much easier to have them in a fancy hotel with me than spend long days in a hospital dental lab with dad). When we got back from Vail, we would have a few days at home before leaving for New Mexico to see my sweet sister (a/k/a the kids’ favorite Auntie) and attend a program with Amma.

The first week of June went off without a hitch. Although the event was not kid-friendly, the children did a great job keeping themselves occupied while I manned the books table. We spent a lot of time in the hotel’s two pools and three hot tubs as a reward for the kids’ good behavior. It was a lovely hotel, and we had a good time despite working.

We got back Saturday night and started planning for our trip to New Mexico. I would work all day Monday, but had Tuesday off to pack and prepare, and then we planned to leave early Wednesday morning. I was working late Monday evening in order to get everything done before vacation when Gracie said her knee hurt. I glanced over and gasped — her right knee was bright red and hot with infection.

Even though it looked too red to be treated with orals, I still intended to go on our vacation at that point. I texted Gracie’s doctor to ask if I could start Keflex — our emergency antibiotic — and bring her to the clinic in the morning. The doctor agreed, so I gave Grace a dose of the medicine and stuck her in the bath to soak the knee. I had plans to hang out with my sister-in-law’s sister that night, so after getting Gracie out of the tub and dressing her knee, I left.

Chad texted me about an hour later that Gracie was moaning and thrashing around in her bed. This is a sure sign that she’s about to spike a fever; my heart fell. All hopes of vacation went out the window at that point — fever + infection = hospital. Grace continued to spike every three hours overnight. This was a serious infection indeed. Instead of spending Tuesday preparing for vacation, I spent the morning preparing for a hospital stay. We left for the ER after I showered and packed a bag.

The ER doc added a different antibiotic called Clindamycin to the Keflex Gracie had already started. I was concerned about the drug choice, since neither works well for Grace anymore, but agreed in hopes that we could switch to orals quickly with either option. (I still thought we could go on vacation. Silly me.) When we got to the floor, the infectious disease specialist, Dr. PC, came to the room to check on Grace. I expressed my concerns to Dr. PC about the medicine choice, but he disagreed. He felt like Keflex and Clindamycin provided broad-spectrum coverage for staph and strep, the two most common bugs. He contemplated adding Levoquin, another drug that is only so-so for Gracie, but decided to wait 24 hours before doing so. Levoquin provides coverage for a bug that can live in hot tubs.

Gracie continued to worsen at the hospital. Her fevers spiked high and she was miserable, moaning and writhing in the hospital bed. Poor sweet girl… it hurts my heart to see her like that. I kept telling doctors and nurses that I didn’t think the medicines were strong enough for her, that she’s had them too many times already and doesn’t respond to them, but to no avail. The doctors added Levoquin on Wednesday, so Gracie was getting three mid-level antibiotics rather than the one that would have helped (Daptomycin) that I kept requesting. It is SO FRUSTRATING when doctors won’t listen. Dr. PC in particular did not seem to think that Daptomycin would be necessary, but agreed to check again in 24 more hours to see if the Levoquin had helped.

Thursday morning, I awoke at 5:45 am to all the lights on and two nurses standing over Gracie, chatting and drawing blood. My nice-filter was off — I chewed them out for waking her up that way. Their explanation was that the doctors want the night nurses to draw blood so the results would be available by the time they got in. So, waking a kid up at 5:30-5:45 is for the doctor’s convenience — ARGH!!! It was not a great way to start the day. As the nurses left, they cheerfully told Gracie she could go back to sleep. Apparently they don’t understand her (or most kids) at all. Of course she was awake for the day. Who wouldn’t be, at that point?

The day did not improve from that point. Gracie shattered her iPad screen (it’s kind of a miracle that it hadn’t happened before), she sprayed perfumed body spray in her eye, I found out her blood work showed that her infection markers had risen, and then Dr. PC came in. Again, I stressed to him that Keflex, Clindamycin, and Levoquin had all been given to Gracie many times over her life, and they simply were not effective anymore. I again pleaded for him to switch to Daptomycin. He refused, saying that Dapto is for resistant infections and he absolutely would not give it to her, and that his partner would not either. He left the room and I burst into tears. We were going to be stuck in the hospital for indefinite days with doctors who refused to listen to the Gracie-specialist — me. I may not have gone to medical school, I may not see sick children every day, but there is NO ONE in this world who knows more about Gracie than me (well, maybe other than Gracie herself).

The nurse came in while I was crying and he, too, was upset that Dr. PC hadn’t listened to me. He called the patient advocate and went out to talk to the hospitalist — the floor doctor. The housekeeper, a wonderful woman from East Africa, sat with me and chatted. She, too, has a special needs son, and she reminded me that tears wouldn’t help but anger might. I am not really a person who expresses anger to strangers, though; I’m much more likely to cry than to yell. She chided me to wipe away the tears and be strong. She is a wise woman. I composed myself and went back to work on my computer. (What else do you do when you’re stuck in a hospital room all day? I actually had a very productive work day yesterday, despite everything.)

Before long, the hospitalist came in. He sat down and had a long conversation with me. I explained to him what I’d told Dr. PC — that Gracie has had Keflex, Clindamycin, and Levoquin many, many times in her life, and they simply are not effective for her anymore, at least not on more severe infections. I asked him to think of her as a 90-year-old cancer patient instead of a 6-year-old. He said, “Well, I don’t have 90-year-old cancer patients, but I do have 9-year-old cancer patients, and I would use Linezolid for them.” Linezolid is one of the drugs Gracie has had before also; it does work for her and is a step up from Keflex/Clindamycin. He was concerned that if we went to Dapto, we would have nowhere else to go. I agreed, and noted that each time she gets a drug it is a little less effective for her, so we need to save Dapto for times when nothing else will work. After about 15 minutes or more of actually listening to me and formulating a plan together, the doctor agreed to change Gracie’s antibiotics. He would keep Levoquin to address any possible gram-negative bugs that live in hot tubs, but switch from Keflex and Clinda to Linezolid.

I was cautiously optimistic that this plan would work but also worried that we’d farted around for too long without adequately treating the infection properly. Even though the three antibiotics weren’t working well enough to cure the infection (obviously, since her fever and the redness continued to worsen), they were helping a little — they kept the infection from exploding and instead kept it to a slower crawl. Gracie got one dose of Linezolid yesterday afternoon and one dose overnight.

Today is Friday. We have been in the hospital since Tuesday morning. But I’m happy to report that today her leg has noticeably improved. YAY!!! It is the first day she hasn’t worsened. The redness is significantly less pronounced and she feels like her normal temperature. Her knee is still hot but that’s to be expected. No fevers and less redness means the drugs are working. Hallelujah! I’m so relieved. She will probably be able to go home tomorrow, and maybe today if the docs really want to get rid of her (we haven’t seen them yet this morning).

The moral of this story is that doctors really, REALLY need to listen to parents. We may not have medical degrees, we may have learned the medical lingo as a second language, but we are the experts in our own children. I’m grateful to the floor doc for really listening and for changing his plan based on my input. I’m worried about our continued relationship with Dr. PC; I don’t know if we can work with him again, and infectious disease is a specialty we need to have a good relationship with. We may switch back to the adult infectious disease specialist who saw Gracie in the interim between Dr. D and Dr. PC; I don’t know, though, if she’ll even agree to see a pediatric patient. We may just wait and see what happens before making any decision. But for now, we are on the right path. Thank the good lord.

 

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Hoppy Easter!

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Hoppy Easter to all my peeps!

Today is Easter, and the kids have been enjoying the day. I mean, who wouldn’t love candy for breakfast, amiright?!

Gracie woke up first, at around 6:45. I helped her go to the bathroom, and while we were in there she immediately spotted one of the four plastic eggs hidden in the room. (Okay, maybe it’s a little gross to have eggs in the bathroom, but I wanted to expand the egg hunt this year and knew they’d immediately spot those eggs.) As she stood up and hung onto me so I could pull up her pants, she spotted another egg behind me. What she didn’t spot was the third egg, which was only about a foot to the right of the egg behind me. Her vision loss prevented her from seeing the full picture of the room.

As we left the bathroom, Gracie put her hand right on one of the eggs lining the railing in the hallway, but between her vision loss and the lack of sensation in her hands, she didn’t even notice. It’s hard to imagine not being able to tell whether you were grabbing a wooden railing or a plastic egg, or not being able to see the brightly colored egg, yet that’s what happened for her. She didn’t find the eggs on the railing until I pointed them out to her. (She thought they were pretty awesome once she saw them, though. She swept them all off the railing and into her basket in one fell swoop.)

Traditionally, the egg hunt has been challenging for Grace due to her vision loss. Retinitis pigmentosa has been described as causing “Swiss cheese” vision, with spots of clarity and spots of missing data. The brain will fill in the blanks in vision, allowing people with RP to seem to have better vision than they really do, but the image the brain fills in is not actually the image that is there. Easter egg hunts highlight this difference.

Jackson has his mom’s eagle eye. He immediately spots differences, and is an excellent egg hunter. He did a great job this morning. He even found the well-hidden eggs. Gracie, on the other hand, was great at finding the obvious eggs but would pass by some that were right in front of her, missing them due to Swiss cheese vision holes. (I had asked Jackson early on to concentrate on the harder eggs and let her get the easy ones, and he cheerfully obliged. He feels honored to be the one capable of the harder tasks.)

It doesn’t bother Grace that she misses visual cues. She declared herself the winner of the indoor egg hunt, and did really well outside, too. She stopped hunting eggs outside prematurely, though, to swing. As she swung back and forth, she exclaimed, “I’m an EGG-celent swinger!” She sang a happy song about beautiful Easter mornings and fun happy times. She put on some fuzzy bunny ears and declared, “Easter is my favorite time of EAR!”

Poor vision has not harmed her wit and intellect. Gracie doesn’t need to be able to find all the eggs to enjoy the holiday. I don’t need her to find all the eggs, either. That’s what my little eagle-eyed buddy is for. Together, we make a great team.

Happy Easter, everyone! May you enjoy your day and have lots of egg-celent adventures.

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