Sunday, February 22, 2015

Lent begins chez Hersom

Tuesday was a mess. But I should back up further.

I have been watching a skin infection come and go on both of my youngest daughters. The first time I saw it, I took them to the pediatrician, without urgency. It looked like a largish pimple. She said it was probably staph, and we treated it with an oral and a topical antibiotic. She told me that if it came back, I should use the topical antibiotic. It did come back. And I treated it. And then it came back again, and I did not treat it and it went away on its own in roughly the same time frame as treated. And then it came back again. It was not ever present- it was about once a month. I began to worry that it was a systemic infection that was just peaking out every once in awhile. I thought I should probably go back to the doctor. What the heck is staph? 

Anyway. It was in my agenda, but not a priority until Tuesday. Over the weekend another sore came alive. But this one did not go away. By Tuesday, it looked really bad. I decided I had to take her to the doctor. I wanted it cultured. I wanted answers. I wanted a care plan that did not involve probable painful sores once a month. 

The doctor looked at it an said it had to be lanced (Ew...) and that was not something she could do in the office. But it was a relatively simple procedure that could be done in an ER. She called ahead and we drove across the street to the hospital. 

Now, because Sarah is Sarah, things are never simple. The nurse came in and asked all the usual questions. What are in for? How long have you observed it? Is she otherwise ill? What is her medical history? She has thankfully been very healthy. So, imagine my surprise when they turned on the pulse ox and her heart rate was elevated. The nurse quite rationally suggested that Sarah might just be scared, but she didn't look scared. And let's be honest: it's not like it was an unfamiliar place. The nurse put on the other monitors, which reinforced the numbers. It was not a bad read, Sarah's heart was beating too fast. 

So we skipped the rest of her history. Sarah has SVT. I think she is in SVT. I'll suction to try and break her out of it, but you need to tell the doctor. 

SVT (supraventricular tachycardia) means that her heart is beating too fast. You can sometimes break the episode by stimulating the vagus nerve- and there are a bunch of uncomfortable tricks. Gag her. (Which is why I suctioned her trach.) Put ice on her face. Put in an IV. Having tried these three modes of torture it had been about forty-five minutes and she was still in SVT. (In fact, now her heart rate was higher, since on top of the SVT, she was really, really mad! With her cardiologist on the phone, we had to use a scary drug, called adenosine. It is kind of like a reset button for your heart. It's not working right, so push the button and it will stop and restart and hopefully be in a normal rhythm. Parents should not watch the monitors while this is administered. Flatline is scary. 

It seemed to me that the doctor was getting nervous. She was acting the way I act when I get nervous. She was over-explaining the plan. And the plan B. (Double dose of adenosine.) And the plan C. (Shock the heart.)  Wait. What? Plan C is what?? I prayed. I prayed like a protestant. "Thank you God that this first dose is going to work." 

I believed it. I was not freaking out. In retrospect I am, a bit. But then, I just knew. I was frustrated because needing the adenosine means needing a cardiology follow-up. And it means hospital time. My day was blown. But I was not scared, in that moment. It was going to work. And it did. 

Finally we could focus on what we came in with. (Remember? A skin infection?)

The doctor told me it was more than she could do. It was too deep. A surgeon had to do it, likely under sedation. That means admission. That means a new hospital. So we did all the paperwork and waited for the other hospital to be ready. Since it wasn't an emergency, it took awhile before the ambulance came to transport us. 

Sarah slept the whole ride, and arrived in the PICU in a fantastic mood. Although it was getting late, the surgeon was still there and he'd be able to see her that night. And, he decided light sedation in the room would be sufficient. No OR. Just a five minute procedure. They put her on her vent and gave her some drugs and told me to back up and not watch. 

The surgeon said, "You don't seem like the type of parent to pass out, but I'd be more comfortable if you didn't watch. We don't want two emergencies." I'd have been OK. I have been through scarier stuff, but I'm not arguing. I don't actually need to watch. And Sarah doesn't need me, she's asleep. He was a silly man, and he had everyone smiling as he completed the whole thing very quickly. "When you think of pus, think of us!" (EWW!!) 

It was a long day, but it could have been worse in a thousand ways. 

Sarah came out of sedation quickly. She was groggy, and acting drunk. It was cute and a little sad to watch. She was trying to sit up, but she couldn't without help. She'd push away my hand, then fall on her face in her bed and laugh. It was all so funny. Until it wasn't. She did need serious pain medication that night. By the next day, Tylenol was plenty. By day three, she did not need pain medicine at all. 

The cardiologist visited. He went up, slightly, on her heart medicine. He wanted to monitor, so even if the surgeon would have set us free, the cardiologist would not. I met with infectious disease specialists and the PICU team and general surgery. She could not go home until the culture came back and informed everyone exactly what this nasty infection was. It looked like MRSA. It acted like MRSA. I was trained on what to do about MRSA in the home, before the cultures were back. But still we had to stay until suspicions were confirmed. MRSA stands for Methicillin-resistant Staphylococcus aureus. That mouthful just means it is a specific strain of the staph bacteria which is resistant to a specific antibiotics. It is a tougher than average staph.

All told, it was a relatively short hospitalization. And her SVT is under control again, so that's good. 

Treating MRSA is harder. It was not a systemic infection that peeked out every once in awhile. It is a very common bacteria. Likely, the whole household is colonized. Healthy skin protects pretty well. But if the MRSA can get in, you get what we saw. Skin breakdown, or cuts, or even really dry skin are our bad. So, we treat everyone. And we treat everything. And we watch. For the next three months, towels and washcloths are single use. Sheets need to be changed more frequently. Hand towels are single use. All the towels, sheets and washcloths have to be washed with bleach. Everyone in the house has to take baths either with bleach or with this special yucky soap, twice a week as well as normal bathing. And since we are bathing more often and with harsher soap, we have to lotion up because dry skin is not our friend. MRSA colonizes in the nose, so everyone gets topical antibiotics in the nose twice a day for five days. And clean. Clean everything. Remotes, toys, phones... disinfect them.

For three months, more laundry. More diapers. More baths. More disinfecting. More chores.

When I got home, with a list of ten additions to my regular cleaning chores, I found out that my dear oldest daughter had been sick while I was away. She threw up in my bed. Not just the bedding, but the mattress had to be cleaned before I could go to bed that night. 

I guess it is good to hit the ground running in Lent. 

Blessings. I asked for help, and received it quickly. I am still getting emails asking what else I need. (Prayer! The answer is prayer!!) Every time I feel knocked down, I am astounded to realize I am surrounded with wonderful people who are not just willing, but who want to help. You people. You amaze me. 

Thursday, February 12, 2015


I have had a terrible time writing the Mighty prompt this month. Write a note to a stranger who showed incredible love.

It isn't that I cannot think of an example. I started and stopped six separate letters, and that was the narrowed down list. The man who didn't speak any English who helped me when I couldn't get the brand new wheelchair put together in an airport drop-off. The other NICU mom who hugged me right after I got the worst possible news. The surgeon who accidentally gave me the confidence to make the right choice for my kid. The nurse who gave me permission to be a mom in an ICU. The hospital worker who said just the right thing when I was depressed and lonely. The mom who helped me get home from a disastrous trip to the park.

There are so many letters to write. I realized my struggle was with the word stranger. None of these people felt like strangers. Or if they did, they didn't stay strangers.  When it begins to feel like the world is collapsing, you see who is holding it up and it is not a predictable list. When you suddenly realize you need help, who will notice? Will they step up? The world is full of quiet heroes.

I was talking to a friend about my difficulty. Her beautiful young daughter is a tough cancer fighting kids. She has one of those light-up-the-world smiles which break your heart. It isn't a fight anyone should have to face, least of all these little ones.

We've been friends since before either of us had kids, but we bonded in a new way over our medically complicated daughters. We've both spent long weeks at the bedside, worrying, hoping and praying for our kids. We both have other children, which tears our hearts. There is not right place to be when you have a sick kid in the hospital and a worried well kid at home. We both did a crash course in medical jargon, so we don't have to translate when we are talking to each other. Apert syndrome and cancer are not similar, but hospitals and fears are.

Stephanie said, "I mean, it creates bonds with people you never would have known and makes them feel large parts of our lives."

Yeah. That.

In some ways, the world is smaller. There are real limitations and lost friendships and connections. But, in some very real ways, the world is so much bigger. You feel connected with people you barely know. You are connected with people you barely know. And not just other parents.

When Sarah was born she spent three months in the NICU. For about a week, the hospital seemed like a maze. Where do I find food? Where do I find coffee? Where do I find anything? Despite this, or maybe because of it, I was never actually lost. Every time I left Sarah's room, someone would ask if I knew where I was going. I wouldn't, of course, so they would escort me. It was an interesting phenomena. There was always someone. A doctor, a nurse, a receptionist, an aide, a tech, a janitor, another parent- no matter who it was, they'd offer to take me across the hospital to my destination. I puzzled about it then. I am an optimist. I believe the world is full of wonderful people with few real exceptions. This experience reinforced that, but it also puzzled me. My optimistic worldview would not have been shaken if they had simply given me directions. I'd have gotten lost, but I still would have been grateful for the favor. These are very busy people in a very busy hospital!

A few weeks in, I knew my way around. I was on my way walking briskly and confidently toward the cafeteria when I saw a woman who looked confused. I asked where she was trying to go, and I escorted her there. It did not occur to me to give her directions or to ignore her. I did not think anything at all of it until she offered her profuse gratitude. I realized, that this hospital had successfully built a culture where helpfulness is expected. It is just what is done.

Parenting a kid who is fighting a medical battle submerses you into an unfamiliar world. It is difficult. You might expect it to be unhappy, but it isn't. It is a strange world where it is hard to find strangers. You meet people and enter into their lives. Fast connections are formed and they are real.

We know that kindness matters. Small things can be huge things. We know that a smile from a stranger is sometimes all you need to stay positive. And we know that love and kindness and helpfulness brew healing. We know that the unseen, immeasurable things can be just as important as the measurable things. We know that the medical fights happen right alongside the psychological ones, and choosing one can mean losing the other. We know.

I decided to finish the letters.  All of them.