Night and Day

We saw Gracie’s usual infectious disease doctor yesterday to follow up from the frustrating appointment with the surgeon Tuesday. As usual, I left feeling like my questions had been answered and Gracie would get help. The doctor thought her finger looked worse than when she last saw it, ordered blood work to check infection markers, and referred us to an orthopedist who works with our usual ortho doc to evaluate for possible osteomyelitis. She also prescribed antibiotics but told me to wait to fill the prescription until we knew what direction we were going to take with the finger.

Once again, I’m impressed with the lesser-known children’s hospital in town. As usual, I left the appointment feeling like my concerns had been heard and addressed and that we would get help. This is a stark contrast to the experience we had Tuesday at the nationally-renowned hospital, and a stark contrast to most of the experiences we’ve had at that hospital.

I am still worried about my girl. She is getting infections that are more and more serious, and the antibiotics are less and less helpful. She is allergic to one of the major players in the antibiotic lineup and the other two that are comparable are not as effective for her. She is so young – it is scary to think that at the ripe old age of 3 she is having difficulty with antibiotic effectiveness. It’s scary that she perhaps has another bone infection and the antibiotics are not working as well. It’s scary to think that she keeps biting her fingers – ripping off fingernails, getting blood blisters, and opening wounds – and introducing mouth bacteria into fresh wounds. (She tore off another fingernail Tuesday night and it is a pretty ugly wound. She also has a new blood blister on a finger, a deep purple bruise of unknown origin under a fingernail, she tore off a thumbnail a couple weeks ago and it’s not growing back, and of course there’s the red, swollen finger we’ve been evaluating.)

Although there is much to worry about for the future, I am relieved that we have a good team of doctors on our side. It is the scary infection cloud’s silver lining.

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Frustration

Gracie had an appointment today with a new doctor, someone we’ve never met before. Ever since she had that MRSA infection in June, her middle finger has been deformed. The redness, streaking, heat, etc. is all resolved, but the tip of the finger is mega swollen and red. I’ve been concerned that the infection didn’t resolve, but her infectious disease doctor assured me that it did – her x-rays were normal and her blood work was normal, and if she had a bone infection one or both of those would be affected. But I was still concerned about the redness and swelling in the tip of that finger. I thought perhaps the fingernail was ingrown – it is growing in perpendicular to how it should be – so I asked her primary care doctor to look at it and perhaps remove the fingernail. Little did I know that fingernail removal is a very specialized procedure!

After many days calling specialists looking for someone to remove her fingernail, we were referred to pediatric surgery at the nationally-renowned children’s hospital in town. This is the hospital we switched from – the hospital where the infectious disease P.A. lied in her medical report. The doctor looked very professional in his online profile – the kind of board-certified physician with a long and distinguished CV – but I was nervous to meet him. Physicians with long and distinguished CVs tend to think they’ve seen every possible condition and do not attempt to understand Gracie and her unique issues.

At the appointment, the doctor examined the finger and said he thought it looked infected. He did not want to open up the finger, certainly didn’t want to open the nail bed, unless the possibility of osteomyelitis was ruled out by MRI. He offered to refer us to infectious disease at that hospital, but I declined, saying (perhaps foolishly) that I trusted her ID doc from the other hospital much more than the docs there. He was shocked; I could see the surprise behind his calm demeanor. I told him that she’d had x-rays and blood work two weeks before and it was normal. He told me I could come back if I got the films and he’d go from there. I left his office frustrated – it felt like a total waste of time. I don’t know what he could have given me other than what he did, but I felt like he gave us nothing. And now I’m second-guessing each minute detail, wondering if he believed that she doesn’t feel pain, wondering if he thought somehow I was causing all her symptoms.

The real sufferer, of course, is Miss Gracie. IS it infected? I have thought all along that it looked bad. Can I rely on the x-rays and blood work? Will she have to undergo sedation for an MRI? Is an MRI even necessary when the x-rays and blood work are normal? Is there another doctor out there who can help us, or do I just have to wait and watch until it gets worse and someone will do something?

The irony is that this is the reverse of the situation when the ID doc from the big hospital lied about me. At that time, Gracie’s index finger was swollen and red. We had gotten x-rays that showed osteomyelitis not only in the index finger but also in the thumb – a previously unaffected digit. The ID doc did not think Gracie needed IV antibiotics, and eventually she and I had what I thought was a sort of professional disagreement about the course of treatment – I thought Grace needed IV antibiotics, she thought the orals were sufficient, despite the worsening. I left her office thinking that, although we were both upset, it had gone okay. She wrote that I was yelling, insisting Grace be admitted and given IV meds despite the lack of clinical evidence requiring admission. I didn’t yell – anyone who knows me knows I’m not a yeller. I would never disrespect someone in authority by yelling at them. It hurt not only me, but Gracie – after all, these are her medical records, and it could prejudice doctors against her if they thought her mother would go ballistic on them.

But I digress. This time, I was the one with the clinical evidence, trying to convince a doctor that despite the way it looks there must not be any infection. I left his office so frustrated, so disheartened by the lack of help. I realized as I was driving home that I leave about 80% of all experiences at that hospital frustrated and needing help that no one will give. I leave the other hospital frustrated about 0% of the time. The doctors there talk to me, work with me, explain their reasoning to me. Even when I’m worried about the outcome, I leave knowing that we are a team, that Gracie is getting appropriate care and I can trust them.

So now we’re back to square one. I called Gracie’s ID doc and emailed her pediatrician. I’m sure one or both of them will want to examine her. And maybe good will come of it – maybe we’ll get someone to pay attention finally. But today was awful, and help has yet to come.

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Amazing Gracie

A few days ago, I took Grace to the ER because her hand was very swollen and red. The swelling was so severe that she got a huge pressure sore from her glove. I debated whether to take her or wait until business hours the next day and have an office visit with her primary doctor. She said she was not feeling well, though, and she had a 99 degree temp so I took her in.

By the time we got to the ER, her temp was 102.4. The ER doc x-rayed her hand but was more concerned about a bone infection than a fracture given her temperature. When the x-ray and blood work came back normal, the doctor and I were both reassured that a bone infection was not causing her fever. However, the doctor did not want to let Grace go home without solving the problem. He tested Grace’s urine and found that she had a UTI. (Another UTI… bad news. Grace will have to follow up with the urologist and probably have a procedure she’ll hate called a VCUG.)

The next day, Grace had a fever again in the afternoon – 101.8 – and she had bad diarrhea too. She was shaking, and her breathing was gaspy, and it was very scary to see. I was so worried about her – it reminded me all too much of last October, when Grace had what turned out to be a kidney infection and was spiking fevers with full-on rigors for the whole time we were in New York.

The fever was gone when I went to give Gracie her morning medicine. But she had diarrhea again – another reminder of last October, when she had diarrhea for a month during and after her kidney infection. Grace was so sick then. She can’t afford to be that sick again, especially not now when she’s finally starting to recover from her MRSA infection.

In my worry, I wrote a post about the little bottles on my counter, the little bottles of medicines that I give her in carefully measured doses, medicines that counteract the effects of the infection and medicines to prevent complications from the other medicines. Medicines that keep her alive and out of the hospital. I was scared, and that came through in the post. I didn’t publish that post – it was too raw.

I am glad I didn’t. I was so scared, but here it is, the next day, and Grace is acting better. She is still low-energy, she looks pale, and she has terrible diarrhea and a bad rash, but she does not have a fever and the swelling is down in her hand. My girl is fighting this infection and winning the fight. She’s awesome, and I shouldn’t limit her with my worried mama thoughts. She will be fine. Rare disease or not, she will get through it. She’ll grow up. She’ll be a nuclear physicist, or a lawyer, or a musician, or some other very successful person. She’ll have babies and love them well. She will get through every obstacle that comes her way. She is amazing – Amazing Gracie.

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Coding

For my work, I do a lot of file conversion, including converting Word documents to HTML for web viewing. When the file is converted, it frequently comes through with unwanted code, which I carefully parse out of the HTML file. Making even a small mistake with the code – accidentally deleting an end bracket, for example – can have a huge effect on the text of the document. DNA works much the same way, apparently – one small change can make great changes in how a body functions.

When we saw the specialist in NYC, she recommended testing for a particular rare condition called Posterior Column Ataxia with Retinitis Pigmentosa (PCARP). PCARP can cause sensory neuropathy, sensory ataxia, and RP. It is diagnosed with genetic testing – the disease is caused by mutations on a gene called FLVCR1. One of Gracie’s specialists recently tested her for this condition, and we got the results last week. Grace has a mutation of unknown significance on the shared DNA portions of the gene. Although this particular mutation has never before been reported, it’s more likely than not that her symptoms are caused by this one small error.

With my HTML files, I can just go back into the code and fix my error. The file will go back to the way it was supposed to be. With DNA, we don’t have that ability – yet. There is research underway about how to parse out bad DNA and fix the genetic code. This could offer hope to people like Gracie, who are beautiful and perfect but have coding errors. Hopefully someday, in our lifetimes, this technology will blossom.

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MRSA is No Joke

How ironic that only two posts ago I discussed superbugs and their potential implications for our medically fragile girl. Grace was admitted to the hospital again two days before we left for our vacation. She had cellulitis again, this time in her right middle finger and left knee.

The knee was surprising; she had a small wound on that knee that didn’t look great but it never looked terrible, but the day she was admitted her knee became red and hot. Presumably the infection came from the little wound that wouldn’t heal. That infection could have gotten very bad – her joint could have deteriorated very quickly. Luckily, it got better quickly and has been mostly fine since. We dodged a bullet, as my hubby would say.

Unfortunately, her finger has not healed so well. When we were in the ER, the doc cut into her finger to try to culture some gunk (medical term) but instead only got blood. They cultured that anyway, and we found out she has MRSA – methicillin-resistant staphylococcus aureus. We all carry staph on our skin; it’s a bacteria that usually lives in harmony with our bodies. The everyday variety of staph is MSSA – methicillin-susceptible staphylococcus aureus. MSSA can become resistant (MRSA) when an infection is not fully treated before completion of antibiotics. So, it’s not really that surprising that her staph infection has become resistant – after all, two posts ago I discussed how many short courses of antibiotics she’s had since March. However, this time has been different.

MRSA is no joke. Her finger has been up and down many times since we left the hospital three weeks ago, and we’re still not out of the woods. A week after we left the hospital, the finger was not progressing well and I called her infectious disease doc to set up an appointment. Two days later, the finger was very swollen and bright red with white at the tip – there was no blood supply to the tip due to the tremendous swelling and infection. We started the two-day drive home the next day, and that night she got a fever. She was hot, she was cold, she was shaking – it was reminiscent of the rigors of last October. The next day, I gave her Benadryl in the car so she’d sleep. She slept most of the way home, and was fine when we got back. By the following day, when we had a follow-up with her regular pediatrician, the finger looked fine except for the swelling. Since then, it’s gotten red and then gotten better. The swelling has gone up considerably then come down somewhat. The knee has been red one day and fine the next.

Her little body is waging a war on MRSA, and it’s not yet certain that she’ll win – each day is a new battle. We are going to try the homeopathic remedy of adding tea tree oil to all of her bath and laundry products, and continue to give her strong probiotics and multi-vitamins. If the infection worsens, we will take her back to the hospital. But we will help her in her fight every day; we will help her win this war.

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Family

IMG_2033We just got back from a week-long vacation with my whole family. It was awesome – spending time with my parents and siblings was rejuvenating. While the grown-ups communed, the kids – all the first-cousins on my side of the family – played together. A good time was had by all.

It struck me after the week ended that everyone there accepted Gracie for who she is, and no one excluded her because of her disabilities. There was no fighting for her inclusion. There was no struggle to have her receive some basic service that’s practically guaranteed to a “normal” child. She is just Gracie, and her cousins love her and accept her for who she is. She played with them, they played with her, they all had fun together.

Now that we’re back in the real world, I am faced with finding part-time child care for her, finding a school that will accept and accommodate her, finding a place for her where she will flourish and thrive. But with family, I don’t have to work to have her accepted – they all love her for who she is: the beautiful, smart, sweet, silly, kind, wild child that she is. And she loves them, too.

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Antibiotics

I see a lot of articles lately about the dangers of overusing antibiotics – how dangerous superbugs like MRSA are going to kill us all and how parents need to stop giving their children antibiotics for every cold. Those types of articles terrify me. People like my daughter are the ones who will be first to die from aggressive infections.

Gracie is back on antibiotics. Since her March hospitalization, she has had no more than 10 days off antibiotics before starting another course. First she had the cellulitis in her finger, then a bladder infection that wouldn’t quit, now she has impetigo and presumably strep throat too along with an ear infection. She is dependent on antibiotics to survive.

The antibiotic dependence is terrifying because of the possibility of her getting stricken with a superbug. But we are dealing with something much more real and much more terrible. Now, five days into this latest course of treatment, she has a fever. She is getting sicker despite the medicine. I have been told so many times that she needs to be brought in immediately if she gets a fever while on antibiotics, but we can’t go in right now – we’re out of state.

If we were at home I would have taken her to her doctor today, but we’re not. We’re a long way from the team of doctors we’ve assembled so carefully and the hospitals we know so well. We are biding our time – monitoring the fevers and trying to enjoy the visit. If her fever continues to rise we will have to find an emergency room here, but if they stay the same or improve we’ll wait until we’re back in our hometown. Always the difficult decisions – it is so stressful to have to wait a few days while we’re out of town, perhaps letting the infection grow, but it’s also stressful to think of potentially having her admitted to a hospital in another state.

So yes, I am worried about antibiotic resistance and superbugs. It hits too close to home – it is something we deal with daily, weekly, monthly. We are always fighting infection, and hopefully will always win the battle.

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