I hate bacillus!!

We all have a great big pool of bacteria living in our intestine. It’s a collection of the good and bad that we have encountered in our lifetimes. We need it. It helps to break down the carbohydrates we eat, fermenting it to get every last good drop out of it. Doctors call it flora and for a healthy person, it’s kind of like a nice vegetable garden plot that’s gathered up all the nutrients of years of gardening and fertilizing over years to make the soil rich.

However, when you lose the valve between your large and small intestine, that bacteria gets out to places it shouldn’t go, like your duodenum. And if your duodenum happens to be distended and have undergone multiple surgeries, it might just be a bit leaky. And then, the bacteria can get into the bloodstream. This is how Patrick usually ends up in the hospital. Bacteria from his gut leaks into his bloodstream. Often, the ethanol locks we use keep them out of his central line, giving his body a more fair chance to fight off the infection on its own or with the help of a dose or two of antibiotics.

Sometimes, though, the infection gets into the line. It lives in a little slime called “biofilm” that I imagine as kind of like ectoplasm… You know, pink and slimy and really hard to get rid of, and with the ability to do bad, bad things to you until you get rid of it. Some bacteria set up a biofilm that’s impossible to get out of the silicone of a catheter. Instead, it lives and breeds there and, because the catheter is in Patrick’s heart, just get pumped through his entire body. This is called sepsis.

Bacillus cereus is one of those nasty bugs.

It’s not malicious like other bacteria. It doesn’t knock him out all at once. It’s more like mold in your basement.. just quietly growing there not really doing harm until one day it makes you really, really sick.

Last week, Patrick’s cultures turned up bacillus cereus. I hate that bug!

It often grown in rice. And when you eat it, it just kind of hangs out in your gut and might make you feel a little sick for a few days. But then your body balances things out. And then it lives there in your intestine forever. Just kind of hangs out, not doing harm, in fact, working a little like a probiotic.

Unless your gut is really sick and you’re on three different oral antibiotics and super heavy duty IV antibiotics from time to time. Then it takes over. And it leaks into your bloodstream. And it sets up shop in your IV. And it doesn’t make you sick all at once. In fact, I’ve seen it smolder making Patrick not feel quite well, but not be really sick either, for a whole month before enough of it was in his line to send him to the E.R.

At first, the GI doctors caring for Patrick last week heard this bacteria’s name and said they’d see if they could treat through it.. i.e., leave the line in place and just hit it with lots and lots of antibiotics.

But as soon as the infectious disease team heard the results (and saw them next to Patrick’s name) they said his line had to come out. Well, actually, they sent the poor first-year resident on the GI service to tell me the line had to come out, and that they wanted to do it that same night. I say “poor” because he was met by a mom who told him I wasn’t willing to act that quickly when my son no longer had any symptoms of an infection. I told him we needed to talk more, to think about it. And when he called surgery down to look at the last ultrasound of Patrick’s veins and tell me that he had lots of good access, I refused the evening OR opening and asked for a slot in the morning instead. And I topped it all off by crying.

Now, I’ll confess, my reaction was partly emotional. I really hate when Patrick loses a central line. Having a peripheral IV and having labs drawn from a vein every morning before the crack of dawn is misery. And I remember all too well the helpless feeling when we sent Patrick in for a routine PICC line replacement only to have them come back 2 hours later and tell us that there was nowhere to put one.

I don’t take removing Patrick’s lines lightly.

Monitors and short IV lines often require Patrick to play in bed. Thank goodness for child life for bringing fun things to do, and to Patrick’s teachers for teaching him what exactly a box of crayons and a giant piece of paper are for.

And we have experience with bacillus, too. Three times in a row. We even pulled a line and had it grow back. And we could never decide if it was the nature of the bacteria itself that made it keep coming back, or if it was some outside source causing the contamination.

So, when the doctors wanted to take out the line this time, I wouldn’t agree to it right away. I called Seattle Children’s Hospital for a second opinion. (Unfortunately, they agreed without even batting an eye at the question.) And then I made the infectious disease doctor come personally to discuss the problem with me. We kept him for nearly an hour going over the pros and cons of removing the line, the plan for treatment afterwards, the safe window for putting a new line in.. and on and on. (Did you know that infectious disease doctors really like talking about bacteria?) Most importantly, Brian arrived and we were able to discuss the options as a family.

And then we called surgery back and they still had a slot to squeeze Patrick in for a line removal that night.

The plan was to remove the line, wait 72 hours, treat with antibiotics, and then put a new one back in. Continue another 10 days with mega antibiotics, antibiotic locks, and ethanol locks, as well as an increased dose of antibiotic delivered directly to the gut. All in the hopes of eradicating this infection completely from his body and keeping it out of the new line.

Because he still needs IV fluids and nutrition to survive, and needed IV antibiotics, Patrick had an IV placed in his hand, instead. That IV worried him so much that first night! About every 15 seconds, he would tap me and tell me “Momma, Vee-vee!” Even at 1 a.m., he’d doze off, then wake up and tell me again.

In the morning, while getting Patrick dressed, I made him look for the line in his chest. He was just certain it was still there, and it took several attempts to convince him that it wasn’t. Once he grasped that, I could explain that the IV in his hand was another line.. and that he’d only need it till he could put a line in his “belly” again. Then it was ok. Or, well, at least mostly ok.

The rest of the weekend was fairly uneventful. We convinced the resident doctor that Patrick’s labs could be saved for after Patrick woke up on his own.  We got precautious lifted so he could roam the hospital. And we did our best to keep him happy and entertained. (Visiting spiderman, hiding in the cupboards in his room, coloring pictures, filling my pockets with matchbox cars, reading books, and watching lots and lots of Signing Time.)

But, since Patrick is allergic to vancomycin, he needed benadryl continuously in his system to safely receive it, and so between the meds and the interrupted nights’ sleep, he was still overtired and therefore really restless.

Fevers stayed gone, but he started to have little bloody noses. Nothing big. Just a sign that his spleen wasn’t happy about the infection. (I could see a little spleen-lump on his side.) Labs confirmed his platelet counts were low because his spleen was hogging them, but nothing was bad enough to worry about the risks of a transfusion.

Still, his blood cultures stayed negative and we got clearance to have a new line put in on Monday. They promised to take him to the OR at 10, and came for him at about 10:30. Pretty darn timely for a hospital on a Monday morning.

Most people can just go without eating to prepare for surgery. But Patrick’s belly is never really empty. So, he needed to spend the morning with a g-tube draining his belly.

He was actually a really good sport about it.  We started out with a blanket fort on his bed, but that got old. Soon he wanted down to play. My plan was to play for 45 minutes, then spend 15 minutes draining every hour. He was playing with a pillowcase, and so I showed him he could wear it around his neck to make a cape. This kept his back warm, and somehow that made him comfy enough to be willing to sit and play with me. We watched videos and played with crayons. His nurse brought him a pinwheel and a stuffed animal wearing a scrub cap. (Can you say spoiled?) Really, the only tough thing of the morning was me trying to get breakfast without breaking Patrick’s heart that he wasn’t allowed to eat.

Thankfully, they were on schedule in the OR, and he didn’t have long to wait.

By 10:35, Patrick and I were sitting in surgery. The anesthesiologist took a quick history and gave him some medicine to help him feel brave leaving me. He let him wear his cape into the OR, which made me very happy. We didn’t meet the surgeon before the procedure this time. But it was the same one who’d removed the line, so I didn’t worry that she knew the case well and that he was in good hands.

I’m always greeted like an old friend when I checked in at the surgery waiting room. (Been there a little too often, I suppose.) And found myself a corner to hang out in. Brian joined me just a couple of minutes later.

Line placements traditionally take about 45 minutes to an hour, just enough time to catch up on e-mail and facebook and then play a game or two on my iPod. But 20 games of Boggle later, (i.e. 1 1/2 hours), I was getting restless. Anything longer than an hour and a half almost always means complications.

I tried talking myself out of it. After all, I hadn’t seen the surgeon. Maybe her last case had run long or she’d been called away for a consult. And this doctor is notorious for taking extra care to document her surgeries afterwards, so maybe she just needed more time.

At 2 hours, I was done being patient. I went to the desk to ask them to call back for an update. But as I arrived, they called my name. Patrick was ready for me in recovery.

I pointed out that I hadn’t had a chance to talk to the surgeon yet, and they said they’d send her back to me in PACU (post-anesthesia care unit).

Patrick was pretty unhappy when I got back to him. His hair was sticky and he was grumpy and just kept asking me to take my glasses off and get in his bed. But I’m rub his head and hold his hand, and he’d go back to sleep.

Before long, Dr. Meier, the surgeon, arrived to talk to me. As soon as she appeared I asked her if there had been complications that made placing the line take so long. (This explanation uses some anatomy, so here’s a hopefully useful little diagram.)

She explained that they had started by trying to put the line back into the right interior jugular. The ultrasound implied that this was open.

However, even though they could pass a wire through the vein, they just couldn’t get a catheter in. Finally, they’d gotten a special intraoperative X-ray to come and look to see what the problem was. As it turns out, Patrick’s entire right subclavian vessel (the one behind his right collarbone) was blocked with scar tissue. There was enough of this scarring that it overlapped into the path of the right IJ and it just wasn’t side enough to fit a catheter through. This explained to me why the last ultrasound showed so many collateral vessels that it was impossible to see the right subclavian.

So, they’d gone back to the left side. Because the line had just come from the left subclavian, it’s not recommended to go back there. So, they’d decided to put the line in through the left subclavian instead.  The left subclavian had scar tissue in it, too..but not enough to completely block the vessel… just enough to make the fit extra tight. (I guess that this was the reason the last line placement taken longer and had resulted in so much blood loss.)

So, they’d gotten a line into that side, but it was a tight fit.

I asked the doctor if this meant I should have fought harder to save the line instead of removing it. She said no. In fact, she said that prolonged infections treated “through the line” are what cause the scarring. She said pulling the line as early as we did has likely saved the vessel.

Then, she asked me about the double lumen and advised me to be careful about it clotting easily, and we went on our way.

By then, Patrick was doing well enough to return to our room. Brian joined us on the way up. The room was a hum of activity for the next hour or two. The discharge planner came to make sure all orders were in place for home TPN and antibiotics. The resident came to work on writing orders for Patrick to eat and take his meds again. I called to order lunch to the room. Meanwhile, Patrick’s line site started bleeding, and the nurse hurried to apply pressure. Brian finally gave in to Patrick’s pleas for someone to cuddle him in bed. I spoke to the pharmacy and Patrick’s home nurse to make arrangements for supplies and labs when we came home. The nurse started the afternoon dose of antibiotics. And brought Patrick a brand new LeapTop (toy laptop computer).

Finally, I ate and Brian and I traded places. Brian packed up the toys and odds and ends in the room and carried them down to the car. Then I took a turn and went to get prescriptions from the pharmacy, as well as the benadryl and motrin we’d need to pretreat every dose of antibiotic with. After all, Patrick’s allergic to vancomycin.

At long last, around 4 p.m., Patrick was awake and everything was in order, and we got the go-ahead to go home.

It was nice to come home and let Patrick sleep. But I’d forgotten how hard it was to come home on antibiotics. These ones are due every 6 hours. So, we got home and had to hurry to get that delivery of medications here, put away, and prepped for the evening dose.

Finally, it was time to connect TPN and start the antibiotic. Only, when I went to flush Patrick’s line, it didn’t want to flush. Or draw. It seemed clotted already.

I worked with it and got it working, and then revisited it in the morning. First, I found the line is smaller, and that is part of it. However, 24 hours worth of declotting efforts later, it became clear that the problem wasn’t just a clot in a small line.

I could kiss the nurse that gave Patrick this toy. It has been a lifesaver as I’ve tried to get us settled back at home. Patrick loves it and plays with it for hours on end. And, after just a few days, he is already recognizing the letters B & O, not just from the keyboard, but in other places, too.

Here’s my theory. Patrick’s past 3 lines have been very, as the nurses like to call them, “positional”. He needed to sneeze or slouch or clap his hands above his head to get them to work. After seeing the surgeon’s explanation about scar tissue, I think that there is scar tissue inside the veins pushing against the catheter and keeping it from working.

One day 3 with this line, I figured out that if I flush both lumens at the same time AND have Patrick clap his hands or raise them above his head or reach for something really far away with his left hand, then the line works well.

This is not a good situation to be in. Honestly, I’m pretty scared about it. Because it means that, regardless of what ultrasounds have shown us, Patrick is a lot closer to running out of places to put central lines.

Dr. Meier said that a balloon dilation may be able to open up the vessels. Honestly, I think that the next line will likely require that kind of intervention. And with this line feeling as tight as it is, the chance of it clotting off or breaking beneath the skin again is a VERY REAL possibility. Most likely sooner than later. I don’t see us getting another happy year out of this line.

The only other option I can see is to only use a single lumen line next time. However, that means no more ethanol locks, and I certainly don’t want to go back to the battles with infection we struggled with before.

And so, if you ask me if I’m happy that Patrick’s home and if things are all better now, and I scowl a bit and give you an elusive “things are better, but not all better” kind of answer, that is why.

First, I am overtired because we are giving antibiotics every 6 hours, but have to get up half an hour before each dose to pretreat for them. And second, I’m fairly worried about the problems with the line.

On top of that, 24/7 benadryl makes Patrick sleepy, grumpy, naughty and clingy. And I can still see his spleen, which means that his spleen and his liver are not happy. I don’t expect them to improve until Patrick is done with benadryl.

All of this has been another big wake-up call for me. It has reminded me how fragile Patrick’s current state is. How fragile his life is. It all feels a bit precarious to me.

(And speaking of precarious, I heard Patrick busy in the living room while I worked in the kitchen the other day. Came to investigate, and this is what I found. He was SO proud of himself.)

The first time we met Dr. Jackson, he described Patrick’s condition as clocks slowly winding down. It’s like we’re racing against sand spilling out of an hourglass… only all I can see is the sand pouring down.. I have no idea how big the hourglass.

So this week we fed some ducks and we went for a bike ride and we went to the Disney store and we read some extra books.  And I rocked him a little longer. And I kissed him a little more.

And I am hoping and praying that next week the antibiotics will be done and he’ll stay healthy, and when we talk to his GI he’ll have answers about the problems of lines and spleens and bacteria in the gut.

Did I mention I hate bacillus cereus?