Bridges

Sometimes, you have to stick up for your kid, even if it means burning bridges. We have had a few bridge fires throughout this special needs journey. The first one was probably with the infectious disease department at Children’s Hospital; I thought they were not taking Gracie seriously, they thought I was hysterical, it didn’t end well. Thankfully, we live in a city with two hospitals for children, so we had other options for Gracie’s care.

Next, there was the whole unpleasantness with Anchor Center. I will probably never forgive Anchor for the way it treated us. It’s too bad, too; before things went south, I had dreams of working there or even being the executive director someday. Now, I can’t even see their logo without feeling angry and hurt.

Today, the bridge with Gracie’s current GI specialist burned to a fiery crisp. Or at least, I assume it did. I would know for sure if the doctor had gotten back to me.

Gracie was supposed to have her endoscopy under anesthesia last week to determine whether the lesions on her small intestine had healed from three months of a gluten-free diet. The doctor wanted it scheduled at 2 p.m. because it was easier for him, completely disregarding my protests that it would be harder for Grace that way. I wrote a post about it. After writing that post, and after talking to a good friend who’s been on this path longer than us, I decided to bring my concerns to the doctor’s attention. I emailed his nurse the Thursday after our appointment, five days before her scheduled scope Tuesday afternoon. Despite having been quite responsive when I sent Gracie’s diagnostic information, I never heard back from the nurse about my question—no confirmation email, no note to say she would ask the doctor, nothing. Red flag!

Flames sparked under the bridge.

My email apprised the doctor of my concerns—I’ve never believed she has celiac disease, but think instead that she had an intestinal infection last August and September, and if it was an infection, it seems that the lesions could have healed on their own in 11 months. I should have also said that even if she does have celiac, three months is probably not enough time to heal her intestine, since she is known to heal very slowly. I did say, though, that since the doctor did not scope her immediately prior to beginning the GF diet, there was no way to know if the diet had helped her or if she had healed on her own, and that I did not want to subject her to anesthesia unnecessarily. I tried to be very politically neutral, knowing that the doctor’s ego could be inflamed by my questioning of his practices. Alas, the silence on his end has spoken volumes.

After sending that email, I thought more about how horrible it would be for my child to spend the entire day NPO (nothing per oral, a/k/a no food) before the procedure, and how she would not be able to control her behavior or her hunger. On Monday, 48 business hours after sending my email but approximately 24 hours before the scheduled procedure, I called the doctor’s office to reschedule, telling the receptionist, “I don’t care how long we have to wait, I just want the procedure to be first thing in the morning.” Turns out they had an opening the following week. Another red flag! While still on the phone, I told the receptionist that I had emailed my concerns to the doctor but he had not responded. She assured me that she saw the email on the top of his desk, and he would respond the following Monday when he returned to the office. I warned her that I would be forced to cancel the procedure again if he did not.

The flames under the bridge were starting to grow at this point.

I waited all day yesterday for a call or email from the doctor, but none came. That printed email on his desk is probably buried under a stack of files by now. He may have read it, or maybe not, but because he did not respond right away, I’m sure he never will.

In the meantime, Gracie has been—well, off, for lack of a better word. Her behavior is not as exemplary as usual, she’s not eating as well as usual, she threw up Sunday night (perhaps precipitated by my insistence that she eat her corn), she’s not sleeping as well as usual, she’s just not quite right. She doesn’t have a fever or any noticeable infections, but she has a giant pressure sore under her cast, so my mom-alarm is going off. I emailed her pediatrician for advice, and she said that I should get Gracie into ortho before next week (her follow-up was scheduled for Monday morning). Today, I called ortho and spoke to one of the PAs who knows Gracie well. I expressed my concerns, noting that it could just be paranoia, but the PA said that if I was worried we should check it out. Thank goodness for doctors who understand! No red flags there—what color do they use for all clear, or grateful? Green flags, maybe? Green flag! The PA set us up to go in tomorrow morning, right at the same time Grace was supposed to be going under anesthesia for her scope. I was not too sorry about the timing.

I called GI again to cancel the scope. The exasperated-sounding receptionist asked me why I was cancelling. I told her it was because Grace had another urgent medical matter, and also because the doctor had not addressed my concerns. She said she would write that it was for other medical issues. No one wants to hear from the concerned parent at that office, apparently! Because the receptionist did not convey my full message, I decided to email the doctor’s nurse again. I forwarded my previous email with a note that I had to cancel the scope because of other urgent medical issues, and I would wait to reschedule until the doctor addressed my concerns. Do you think she responded? Nope, crickets. Total black hole. Total red flag.

The flames have nearly engulfed the bridge now.

We have been through enough for me to know that the relationship with this doctor is irreparably broken now. He will not call, and his nurse will not email. Thank goodness it’s not a specialty we really need, like infectious disease. No, GI has done nothing for us at this point except make our lives harder. Certainly they have not helped.

The only problem is, we still don’t know for sure whether Grace has celiac disease. I don’t think she does, but I can’t be sure. Because of that, she has to remain gluten free. We can’t take the chance—being on a GF diet won’t hurt her if she does not have celiac, but it will hurt her to take her off the diet if she does. There’s no choice. We will do the GF thing for a while, possibly months or years, since we have no doctor to guide us now.

Sometimes, Mama’s got to burn the bridge. Sometimes, you have to tell doctors that you don’t agree with them. Sometimes, doctors are okay with that, and other times they don’t want to see you again. It’s the price we have to pay. Ain’t no one gonna hurt my girl, though! No one’s going to subject her to an unnecessary medical procedure. She goes through enough out of necessity. This Mama Bear—or pyromaniac, I guess, to keep with the burning thing—will fight to the end to keep her girl safe. I love that kid. She’s my baby and I won’t allow someone else to hurt her. Not even a doctor.

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Adaptability

One of Gracie’s greatest qualities is her ability to adapt. She never lets circumstance get her down. She just finds a new way. I remember when she was a baby, when we were first learning that she didn’t feel pain and trying to keep her from biting her fingers, we put elbow splints on her so that she couldn’t get her hands into her mouth. At that time, she still used a pacifier, but she couldn’t get her hands up to her mouth to put the paci in when she wanted it. No problem for Gracie, though. She would take her straight arms and put the pacifier right in front of her, then move her arms to the side and bend over so she could pick up the paci in her mouth. Triumph!

That story reminds me of another story I heard years ago. A man wanted to know  what heaven and hell were like, so God first took him to hell so he could see the place. There was a huge table stretching all down the room with every kind of good thing to eat. Everyone was sitting at the table crying, though, because the only spoons available were longer than their arms and they couldn’t get a bite in their mouths. Then God took the dude to heaven where he saw the same table filled with every kind of delicious food. But in heaven, the people were feeding each other. Gracie is always in heaven, even if there’s no one else there. She finds happiness—and creates it—everywhere she goes.

Gracie got another cast today. This one makes it even harder for her to use her thumb, and all the rest of her fingers are tucked away so that when she falls, the cast will take the fall and not the hand. She is completely unfazed by the loss of her hand. It barely bothers her at all. She uses the cast for support and uses her left hand for everything else. Tonight, she set the table for us for dinner, carefully handling the heavy plates and neatly placing the silverware and napkins. At one point, Chad tried to help her. Gracie stopped him. “No, Daddy! I can do it myself.” And she did. No problem.

Grace will not be undergoing the endoscopy tomorrow. I called today to reschedule the appointment, telling the person on the phone that I didn’t care how long we had to wait but the procedure had to happen first thing in the morning. Turns out his next morning appointment is in a week—we don’t even have to wait. I also emailed the doctor with my concerns about the possible infection last week; he has not responded. When I spoke to the receptionist, though, she assured me that he would see the email Monday. I in turn assured the receptionist that I would cancel the scope if he did not respond, because I will not put my girl through an unnecessary and invasive medical procedure. She goes through enough.

Instead of spending tomorrow hungry and worried, we are going to do something we don’t usually do. I took the day off for Grace’s scope and am not going to work now that it’s cancelled. I’m playing hookie (kind of). We are going to have fun together, just the kids and me. We are going to make the most of this almost-last-day of summer. We’ll go to the zoo and have a picnic, then maybe wander a while before coming home. We will not have a schedule; we will just adapt to what the day brings. We’ll emulate Gracie.

Her adaptability is truly what makes her amazing. It’s not just amazing that she has a very rare medical condition. No, her amazingness comes from her ability to adapt. Despite all life throws at her, Gracie handles it with—well, with grace. Though other kids with perfect arms may not have been able to get their own pacifiers, she was able to get hers. She learned to walk despite what most doctors would agree are impossible odds. She is never hindered by other people’s perceptions. She makes life heavenly. She is Amazing Gracie.❤

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Guts ‘n’ Stuff

We have largely been looking forward to today’s appointment with the gastroenterologist. After three months of a strict gluten-free diet, we were anticipating an appointment where we would tell the doctor that it didn’t work, nothing changed, and could she please start eating normal food again. I was dutifully preparing to tell him all the idiosyncrasies and hiccups we experienced, like how the antibiotics she took in early July when we thought the bone was starting to become infected gave her horrible diarrhea—something that doesn’t really happen anymore since most antibiotics aren’t very effective for her. (Her reaction to the antibiotics made me realize that the arm probably was never infected, especially because when she took another course of them later that month for the decidedly infected finger, she had no diarrhea at all.) I printed out the genetic research study’s findings for him so that he could see that gastrointestinal motility dysfunction is reported with this condition. I had it all rehearsed and ready to go.

You know what they say, though, about the best laid plans…

The first part of the appointment went according to plan. I told the doctor about Gracie’s new diagnosis and how the GF diet didn’t change anything for her. His response stopped me in my tracks: “Well, let’s schedule a repeat scope as soon as possible so we can see if she does have celiac. Can you do it this week?”

I didn’t even get a chance to offer my rebuttal because I was so stunned. She has to go under anesthesia AGAIN? Again so soon after the last time? He didn’t tell me he was going to re-scope her after the GF trial; what he told me was we would try the diet and if it worked, it would prove that she had celiac disease. I thought that was enough. I feel betrayed.

The doctor said that if the changes are still present on Grace’s small intestine, we will know for sure that she does not have celiac disease. If they are gone, it is his assumption that the gluten-free diet cured the intestinal lesions.

It took me a few hours to realize why this situation troubled me, other than that I hate having to tell my child no, she cannot have cupcakes at the birthday party, or garlic bread, or french toast, or any number of other delicious foods because they contain gluten and are not a part of her diet. No, the situation troubles me because all along I’ve been working under the assumption that the horrendous diarrhea Grace experienced last August and September was due to some sort of infection (after a solid six weeks of extreme diarrhea, it suddenly disappeared the day after she was admitted to the hospital and started on IV antibiotics).

If it was an infection that caused those initial changes in Grace’s intestine, there is a good chance that the infection has fully healed in these last eleven months. If the infection is fully healed, Grace’s intestine will no longer have the scarring that led to the celiac diagnosis. If she does not have the scarring (and don’t get me wrong, I sincerely hope it has healed), then she is stuck on this awful diet forever. For the rest of her life.

When I initially discussed with this doctor that I did not believe celiac was the cause of her month-and-a-half of diarrhea last fall—because we did not change her diet at all during or after that time period, and the only thing that changed was her antibiotic use, and the diarrhea stopped abruptly when she started the antibiotics—the doctor seemed to agree with me. He said that the number one cause of the intestinal scarring is celiac disease, but numbers two through five were types of infections. At that time, he recommended continuing with a regular diet and following up in six months. After six uneventful months, he told us that the only way to rule out celiac disease would be to try a gluten-free diet. (Nothing about a scope!) He gave me the choice: try a gluten-free diet and see him again in three months, or continue status quo and see him in six months. How I wish I’d have chosen the second option! If I had known that he wanted to anesthetize her again, I probably would not have opted to try the GF thing.

Grace is having her scope under anesthesia next Tuesday at 2 p.m. Because of the anesthesia, she will have to be NPO (nothing to eat and only clears to drink) the entire morning—she will not get to eat breakfast or lunch or snacks. She is sure to be cranky and emotional, which will probably not help my general feeling of unease about the whole thing. And, obnoxiously, even though I told the doctor specifically that early mornings work better and Wednesday would be a better day (because I’m already set to work from home that day), the scope is scheduled for Tuesday in the afternoon. Thanks, doc. It’s not as if I thought my schedule was more important than every doctor’s, but a little courtesy would be nice.

Today was a hard day. It stinks to get unexpected bad news. It stinks to spend half the day driving to and from the doctor’s office on the other side of town (why won’t he see patients in the Denver office anymore?!) only to have devastating news delivered at the distant appointment. It really, really stinks to still have to devote six more hours to work in the day while trying to process bad news. (If I took a sick day every time we got bad news, though, I’d never get anything done.)

There’s not a lot of hope for a good outcome in this case—either Grace will have to remain on the GF diet indefinitely or she still has scarring on her intestine. It’s a lose-lose situation. However, if anyone wants to send good thoughts for an outcome I can’t anticipate that is a best case scenario, I’d appreciate it.

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Special

These past few weeks have been filled with specialist appointments. We saw ortho a few times (seeing her again on the 15th, and who knows how often after that), Grace had her MRI under anesthesia, her annual ophthalmology appointment was last week, she sees GI again on Monday, and we saw a new doctor yesterday.

The new doctor works in the Inherited Metabolic Disorders clinic at Children’s Hospital. We used to see a different doc in the clinic. She was great. She had an MD and a Ph.D., so I affectionately thought of her as “Doctor Doctor.” Unfortunately, though, she moved out of state in 2014, and we haven’t been back to the clinic since, until yesterday. The last time we saw Doctor Doctor, we had exhausted her knowledge. She told us at that appointment that she had nothing more to offer us. It seemed pointless to make a new appointment with a new doctor and have to start all over again, if the extremely cerebral Doctor Doctor couldn’t think of anything.

Dr. McC, the ophthalmologist, had been urging us to return to metabolics for a while. She spoke to one of the docs and explained our situation and he agreed to provide continued care to Grace, should we ever want it. It seemed like a waste of time to me, though, to have to try again with an unknown doc at the hospital where we have had so many bad care experiences.

That all changed when we got Grace’s diagnosis earlier this summer. Suddenly, I needed the advice of a geneticist. I needed to know whether it truly was an autosomal recessive condition that would make every subsequent pregnancy risky, since we’ve been not trying not to get pregnant for several months. I called and took the metabolic doc’s first available appointment, which at the time was six weeks out.

Despite my trepidation, the appointment was not a total waste. We got there right on time and were quickly ushered into the little room where we would see the doctor. It did not take too long for the first doc to come in—or should I say, the first two docs. There was a geneticist and a psychiatrist. (Not sure why the latter was there, but he was very nice.) The geneticist had not realized that we had gotten a diagnosis. (There is poor communication at that hospital, which is one of the things we have had trouble with in the past. The intern doesn’t communicate with the resident, the resident doesn’t communicate with the attending, the attending doesn’t communicate with anyone, and it’s all a big mess.) We spent quite a while with the geneticist, going over all of the aspects of Gracie’s care. Grace was very good through it all, mostly just playing with the toys I brought for her and listening to our conversation.

One of the things I learned from the geneticist was that each pregnancy has a one-in-four chance of producing an affected child. I knew this already, but needed to have it confirmed by a doctor. We will not try for more kids—a child’s health is not something to gamble on. I also learned that Gracie’s particular mutations have never before been reported. That explains why she is so unique. She is unlike even the other people with the PCARP diagnosis, and perhaps it can all be explained by her specific mutations. I learned that they are unsure what metabolic process causes the genetic mutations to manifest the way they do, but perhaps it has to do with heme transport. Interesting. The geneticist eagerly agreed to contact the doctor at the University of Washington who is researching this condition. Finally, there is a doctor interested in contacting the research physician!

The last thing the geneticist discussed was gene therapy. He noted that if the researcher is studying a group of people affected with PCARP, perhaps they will discover the cellular mechanism that causes the phenotype (presentation of symptoms), and then they can work on treatment options. He agreed that if we can find a way to give Grace her sight back, it would really enhance her quality of life. He also agreed, thankfully, that it is not in her best interest to restore her ability to feel pain. She has done so much damage to her body that she would hurt all the time if she could feel it, which he understood. He was a good doctor and a nice person, too. When he left the room after over an hour, he remarked that the other doctor would be in shortly.

It was about an hour and a half later that the other doctor finally entered the room. By that time, Gracie was DONE. She was hungry and thirsty and had eaten all her snacks and drank her water, she had played enough with her toys, and even watching videos on my phone had gotten old. She was ready to go. I was feeling stressed, too. Even though I had my computer and had been working during the wait, I was feeling the pressure to get back to the office. We only spent a few minutes with the metabolic physician. He remarked that no one at Children’s Hospital has ever seen anything like this. He confirmed that there would be a 25% chance with each pregnancy of having another affected child, but urged us not to worry about getting pregnant because they could do pre-implantation genetic testing to discover whether the fetus was affected. I laughed and told him, “I’m 38, we already have two kids, and we wouldn’t terminate a pregnancy. We’ll just try not to get pregnant.” Gracie didn’t like to hear this—she started crying when I said we wouldn’t have any other kids. She so wants a baby to nurture; it stings that I cannot give that to her.

The metabolic physician had nothing else to say, so through Gracie’s cries I packed our things and loaded her into the stroller and hustled out of there. We did all the things I had bribed her with to ensure continued good behavior—we rode the glass elevator up and down, we saw the Lego hospital, we looked at the cool perpetual motion machine with the balls and toys, and we visited the cafeteria for popcorn. She earned her rewards; that was a very long appointment.

Although going in I did not have any hope for a good appointment, all in all it was not bad. The geneticist was very nice and very personable. We will learn more about the condition and what to expect for Gracie’s future after he contacts the researcher. We know that procreating is a bad idea at this point. And we know that Gracie is truly one of a kind—she is one of only a couple people in the entire world with that diagnosis, and the only one with her particular mutations. She’s amazingly unique.

And just plain amazing.

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Of MRIs and Fractures

Right now, Gracie is under anesthesia having an MRI of her spine. She went to sleep quickly and easily, breathing in the Skittles-scented anesthesia while I told her a story. She made it look easy.

It’s not easy on us. Chad is distraught, worrying about his little girl while he tries to work. Jackson even seems a little worried about the whole thing. I am not too worried, because she’s always done so well before, but there’s always that chance… there’s always the risk that something could go horribly wrong. Best not to think about it, though. Shove it aside and get on with it anyway.

It has been a while since I’ve updated here; sorry about that. Life intervenes. Gracie’s arm is no longer infected and maybe never was. However, she had a finger wound that became so infected she probably should have been hospitalized—I’m sure that if we could have seen under the cast, we would have seen a huge red streak all down her hand. Thank goodness for the cast; we have had enough of hospitals to last quite a while. And thank goodness that she responded to the oral antibiotics, too. If she had not, we wouldn’t have avoided an admission.

Aside from infection issues, we are also now dealing with some of the collateral consequences of Gracie’s fracture. Her bone is healing—the picture below shows the huge bony callous that’s forming around the break. Apparently, it’s quite normal for kids with neurological issues to form bony callouses as they heal. I’ve seen other parents of painless kids post about it, but this is the first time we’ve seen it with Gracie. (Then again, this is the worst fracture she’s ever had, so maybe that’s why we’re just seeing it now for the first time.) The bone cloud will take a very long time to dissolve—months. She will not be out of a cast any time soon.

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This x-ray shows something more than just a callous, though. The picture on the right is from two weeks ago and the one on the left is from two days ago. Although the callous is more fully developed now, the bone is worse. The head of the radius collapsed, essentially breaking again. (Off the top of my head, I can think of several hard falls in the last two weeks that could have caused this.) Even with a cast, she is not protected. She’s a little more protected now, though—her cast goes way past her fingertips so that when she falls the cast will take the hit, not her hand.

It seems like we always have a new thing to worry about—often we have several things to worry about at once. Today, it’s the re-broken arm, the anesthesia, and wondering about what the MRI will show. Tomorrow, it may be something different, some new crisis to occupy our minds. Gracie always seems to get through it, though. It doesn’t faze her. And that’s why she’s Amazing Gracie!

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Lottery

We always knew Gracie was unique, but now that we have a diagnosis for her, we can assign statistics to how rare she is. According to one website, the incidence of PCARP is less than one in a million. A few people have told me it’s like she won the lottery. I disagree; it’s more like she lost.

In some ways, she did win the genetic lottery, but not because of her disease. Only because of circumstance. She was born into a loving, two-parent, white family in America. She will never have to know true hunger, because she’ll always have family and extended family to support her. She is able to go to school, and even receive accommodations for her disabilities, because in this country public schooling is given to all children—not just the wealthy, or just boys, or people who are able-bodied. She will always, always be loved.

These past weeks have seen too much violence in America. Two black men were brutally murdered by those sworn to serve and protect. While the country mourned the loss of these men, a sniper in Dallas shot several police officers, killing five and wounding several others. Important, but painful, discussions about race and poverty and judicial inequality ripple through our conversations like aftershocks. We should be celebrating our country’s birthday, and instead are mourning its inequality.

Philando Castile was a school kitchen manager, beloved by all he came into contact with. Alton Sterling had a smile that could light up the darkest hearts. Delrawn Small was a father of small children. Michael Brown was getting ready to attend college when he was killed. Trayvon Martin was armed with a package of Skittles. Tamir Rice was only 12 years old. There are more, so many more. So many black men (and boys) killed for the crime of being black.

This mother’s heart aches for these men, for their mothers, for their girlfriends and wives and children and communities. I mourn for the mothers who teach their sons how not to get shot by the police. I mourn for the children who watch their fathers bleed out in front of them. I mourn for the girlfriends, the sisters, the brothers, the families, the community.

Like many others, I am struggling to make sense of it all. I am struggling to find something to DO, some way I can help. It’s nice to write Facebook posts tagged with #BlackLivesMatter, but that doesn’t enact meaningful change. The time to remain silent is over, though. It is time for all of us to cry out at the inequality—even those of us who do not directly experience it. Inequality and injustice affect us all.

Black lives matter. Muslim lives matter. Lives of disabled people matter. Hispanics matter, police matter, mothers matter, little boys matter. All lives matter. Let us all lend our voices to the cry echoing across the nation—NO MORE! No more violence, no more inequality, no more holier-than-thou-ness.

Like Gracie, I was born into privilege. There is nothing wrong with that. But there’s nothing wrong with being born into different situations, either. There’s nothing inherently wrong with being black, or Muslim, or poor, or whatever. If we can use these killings to realize that we’re all connected, that we all matter, then they will not have been in vain.

RIP, Philando Castile. RIP, Alton Sterling. RIP, officers of the Dallas police force. May your lives not have been lost in vain.

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Dem Bones

Facebook keeps showing me memories of late June hospital stays from the past few years. It’s funny, Grace does tend to be hospitalized at the same time of year over and over again. Last year, it was her knee. We spent 4th of July in the hospital last year; I watched neighborhood fireworks from the hospital window and ached to be with my son and husband. The year before, the year we went to Tahoe, she had MRSA in a finger. That was a hard infection to treat. A couple years before that, she had exposed bone for one of the first times.

Today is the last day of June, and we are not in the hospital. YET.

Gracie broke her arm a few weeks ago, and it has been in a removable (bivalve) cast. I am scared to remove the cast. Her arm is not terribly stable, and the cast is hard to get off, so it’s a nightmare to wiggle the cast off while trying to hold her arm still and not yank too hard. I’ve only been checking it once a week—each Wednesday.

The first time I checked it, there was a pressure sore over her index finger knuckle. Chad dremeled out the cast, I padded it, and we wrapped the arm back up again. I checked it again last night.

The original pressure sore was not bad, but there were other sores over her other knuckles. Her arm was quite swollen, probably more than it had been the previous week. She had deep red streaks down the swelling, as if the padding at the seams of the cast was pressing too hard on her arm. They were the beginnings of massive pressure sores. I called her ortho doctor, not sure what to do. She suggested that I could bring her in to get a new cast, and they could cut it in a different spot so that I can switch them, thereby reducing the risk of pressure sores. It was actually a great idea. We scheduled an early morning appointment for today.

On our way into the ortho appointment, I saw one of the PAs we’ve seen repeatedly at the hospital, E. He is great. I waved to E as we walked by for our casting appointment with the tech. When I took off her cast for the tech, the knuckle sores were not bad – not red at all, and really quite tiny. Her arm, though, was still red and swollen right above the break. Hot, red, and swollen.

The tech remarked that maybe the cast had made the arm hot. She crafted a new cast for Grace, one that will give her more finger movement and also has more padding. She cut it on opposite sides from the other one, so that the padding will not rub in the same spot when the casts are exchanged. She took the cast and left the room so that she could put felt tape over the cut sides and velcro straps around the middle.

Sometime during the appointment, the gears in my head started turning. Gracie has been off for the past few days, acting like she could have an infection. She keeps wanting me to take her temperature (usually a sign she feels like she has a fever), she’s not eating all that well, she’s lower energy than usual. She has a few cuts here and there across her legs, but nothing that looks terrible. Except the arm.

When the tech returned with the newly bivalved cast, I asked her the question I dreaded: “Could it be infected?” She stopped—”I—I don’t know. Let me get E.” Thankfully, the clinic wasn’t too busy this morning. E was in there within minutes. He felt the arm, felt the heat around the break, saw the redness. He agreed, it looked a little infected. He remembered that we’d spent holidays in the hospital before, and didn’t want that for us this year. He prescribed her an antibiotic. Not the very expensive one that requires pre-approval, but one that has worked for her mild infections in the past. (Notably, it hasn’t worked for the more severe ones…)

She’s had two doses now today. I will have to wake up overnight to give her the third. We will have to wait and watch—I will have to check her arm every day until the infection starts to clear. I am worried, so worried, that the infection is in her bone. If it is, she will undoubtedly have to head to the hospital after the holiday weekend, may need surgery, maybe even worse. This antibiotic may buy us some time, but it won’t cure a bone infection. Not in ten days, at least.

Here we go again.

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