Patrick Hoopes

Easter 2012

With all the hospital stays, I’m a bit late posting about easter. Here’s our holiday in pictures.

What to you do for easter when your child is allergic to eggs? My sister-in-law had a good idea. You go to Color Me Mine and decorate ceramic ones.

Patrick had just been learning about painting at school, and so he took pretty well to the idea, though he was content to also paint the table and his chair and his clothes and my hand. Thank goodness this paint is washable until fired.

I was actually kind of happy with how the finished product came out. These are the eggs, ready to be fired. I did misunderstand their 50% discount day. They meant 50% off the entrance fee. I thought they meant the products, too. So this represents $30 worth of easter eggs. Oh well.

I couldn’t resist this suspender and tie set when I saw them come through at Kidsteals.com. I think Patrick was one of the handsomest kids at church. And he loves them! Won’t wear another tie because he always wants his suspenders.

We didn’t intend to buy a swingset for easter. However, when our plans to buy and put together a swingset on an earlier weekend were derailed by a trip to the hospital, we ended up ordering this one online instead.

Fedex accidentally delivered it to the house at the other end of our street. (Thank goodness for kind neighbors.) And then it took several days for Brian and I to get smart enough to build it correctly. (We must have taken that thing apart 5 times.)

But it was worth it. Patrick absolutely loves it and has played outside every sunny day since it came.

What do you get in your easter basket if you can’t have candy or eggs? Lots and lots of toys! Patrick spotted this orange truck when we were grocery shopping the week before Easter. It was quite a trick to sneak it to the checkstand while he threw a tantrum about my not buying it or him. Thank goodness for a cashier who was willing to play along.

We missed the easter egg hunt with Brian’s family because Patrick was sick. (Granny sent him an easter basket full of eggs with die cast cars in them, though, so he didn’t mind.) However, on Easter Sunday we joined my family for dinner and an egg hunt with cousins in the back yard. This picture is Patrick visiting with his aunt after the hunt.

Again, because sweets are no-no’s, I fill 4 dozen eggs with party favors and crackers for this hunt. My mom still brings candy, but we either trade that, feed it to mommy, or give it away.

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?

Facebook and Organ Donation

I mentioned in last night’s post that we’d done a TV interview about the need for organ donors this week. I hadn’t even heard about Facebook’s Organ Donor feature until I got a call Tuesday asking me to do an interview about it. So, in the 10 minutes I had before leaving for the interview, I hopped online to figure it out.

(Here’s a link to the story http://www.abc4.com/content/news/slc/story/facebook-organ-donor-transplant-hoopes/BPsvzgoLDUu1vtEPnzikag.cspx. If you want to watch the video, know that you’ll have to select it from a list of several videos that aired that day. And I recommend that you watch it, just so you can see cute little Patrick.)

It’s pretty simple. Facebook’s new Timeline (replacing your profile page) allows you to add events and information about yourself. And this new feature is one of those things you can share.

You click on “Life Event”, then “Health & Wellness” then “Organ Donor”. And you can share with all your Facebook friends the fact that you have elected to be an organ donor.

So what’s the big deal? Why I did I spend the rest of my day trying to get friends and family to do this?

Well, first of all, there are WAY more people waiting for organ transplants than there are available donors. The push by facebook helps to solve this problem in two ways.

First, it makes it crazy easy to officially register as an organ donor. There are links built into the page for anyone who hasn’t registered yet. And when you share, it puts a link on your page and in your news feeds encouraging your friends to update their registry status and giving them the option to register, too.

Second, it lets you, in a matter of seconds, tell your friends and family of your intentions to be an organ donor.

These two reasons are important because of one simple fact. Once you are in the position to be a deceased organ donor, you are.. deceased. It is your next of kin who makes that choice. But if you haven’t told anyone about your desires to be an organ donor, then they have to make that choice for you.

A couple of clarifications.. registering as an organ donor is NOT registering for live donation. It’s true that 400 living kidney donors are needed in the state of Utah. Livers, lungs can also be donated this way and they are learning about how to donate intestine in adults, even. But this isn’t what this registry is about. This registry is an emergency plan. Would you like to donate your organs if your life were to end unexpectedly?

Registering to be an organ donor doesn’t change the medical care you will receive. But it is one less difficult choice for your family to make.

Age and health problems don’t exempt you from being a donor.

One organ donor can save up to 8 lives. Eye & tissue donation saves and improves the lives of many more.

In the week after this option on Facebook launched, Donate Life saw a 2300% increase in registered organ donors. But I saw the update happen on the pages of less than 20 of my Facebook friends. So there is a lot more work to be done.

So, that’s why Patrick and I hopped on down for the TV interview the other day. Because we have so many friends now whose lives could be improved or saved if we could just help to reduce the need for organ donors.

You’re reading this, so you’re at a computer. Have you posted your organ donor status on Facebook yet?

Again!!??

This week started out with me feeling like superwoman. At the top of the list was that I started out with most of my chores caught up… WITHOUT having had to spend my entire weekend doing it. So Monday, I was able to go out and put in two hard hours in garden by our pond doing some much-needed thinning. Tuesday, still feeling like a rockstar, I dropped Patrick at school, then sat down to work on modifying a few more onesies to protect but give access to his tubes at night. Then the phone rang, and it was Intermountain Donor Services wondering if Patrick and I were available for a last-minute TV interview about organ donation. (When I have more time, that deserves it’s own entry.) So away we ran, and made it home on time for a nap and a few chores and, even though the laundry still needed to be done, we were pretty on-task. I even had two loaves of sourdough bread brewing on the counter that I was tending to.

The only hiccup was that Patrick woke up from his nap a bit grumpy and clingy, so I spent more time watching Signing Time than I usually would have.

Still, Wednesday I thought I could make up the little bit of lost ground. After making a few needed phone calls, Patrick and I headed out to the bank and the grocery store. I promised him that as a reward, we’d buy an extra bag of bread and pack a picnic lunch. We’d go feed the ducks and have a picnic.

He was so excited and kept signing “feed” and shouting “duck.” So I hurried through my errands so we’d have time.

But I kept thinking I should call my mom, and in the end, she called me just as I was finishing shopping. My brother needed some help at home and she wanted to know if I’d watch his kids.

I imagined I’d go pack them up and take them home with me so they could have the whole afternoon, but my brother and mom preferred we stay at the park across from their house, and so I obliged. (And, in case you’re wondering, watching two three-year-olds and a one-year-old while tied to one of the three-year-olds is quite the feat. One will want to go down the slide while another tries chasing a ball into the street and the other will have an owie.. But you can’t tend to any of it without making the one who’s tied to you come along. Patrick is a good sport, you know that?)

We’d probably been there just under an hour when Patrick seemed to trip and fall, but I didn’t think he’d taken a step, and that just seemed wrong. So I picked him up to hold and comfort him… (which made watching the other two easier.. well, that and the fact that my sister arrived just then to help.) But he just wasn’t consolable.

Then I noticed him stretching his legs and arching his back. His breathing was shallow. And I saw the goosebumps on his arms. And I knew.

I went to my car and got a thermometer and, sure enough, 102. So my sister said she could take care of things and sent us on our way.

And just like that, we walked out of one life and into another.

Patrick’s fever was 103 when we got to the ER. He was rushed back to a room and admitted under their septic shock protocol, meaning that they were in a hurry to fix his heart rate and fever, so he got lots and lots of attention.

He got a chest x-ray and a viral panel and blood cultures, though of course his line wouldn’t draw like they wanted without some unclotting first. (Darn line has become positional.) And it took some time and effort, but by 7 p.m. he was admitted to the hospital.

He wasn’t doing very well at that point. Even with both motrin and tylenol, his fever was over 103. He was beyond uncomfortable. We said a prayer together, which calmed him down, as it often does. Then Brian gave him a priesthood blessing, and he cheered up, even though his fever didn’t go away.

He had a pretty good night, but by morning, his fevers came back. The doctors came by and said that both of his lumens as well as a culture drawn from a vein in his foot were positive for a bacterial infection.

That means that he was septic. And it took most of the morning, a lot of antibiotics, and a good, long, deep nap to turn that around.

And because little boys need their mommies at times like that, that means that both of us spent today in bed. (I’ve got the kink in my neck and the knot in my side and the bruise on my arm where his head rests to prove it.) We napped, watched Signing Time, and filled my pockets with matchbox cars over and over and over again.

I am exhausted, though I’ve barely done a thing. And you want a confession, I’m lonely. We’ve done this so many times that I think it’s old news to most friends and family.

And I know that when we get home at least half a dozen people will tell me that if I’d just called them and asked them to help, they would have been right there. But I can’t quite figure out how that conversation would go. And I don’t know what to ask people for. My needs are really basic right now. It takes effort to eat, to sleep, to go for a walk, to take a shower. I am at my wits end trying to entertain Patrick. Especially since last week’s cold means Patrick is restricted to his room until labs prove he’s not contagious. And because until he’s been fever free a bit longer, he has to stay connected to monitors.

And so, I don’t know how to answer that “what can we do for you?” question. And therefore, I stick to Facebook updates and am really making an effort here to update my blog in moment instead of after the fact.

We hope that by tomorrow Patrick will still be fever free, that we’ll know the species of bug we’re treating, that his viral panel will clear him to go for walks, that he’ll get enough rest to play some more big-kid style games… And we hope that we’ll maybe be able to talk about going home with antibiotics by the weekend.

Only time will tell, though. Right now, it’s too early for me to be making conjectures.

So maybe I’ll go snuggle up next to my little boy and go to sleep. Other than the dent he’s wearing into the crook of my arm, that is one very pleasant part about being stuck in bed with a sick three-year-old.

Rant

Warning.. This post is a rant. If you don’t want to read the rant of a special needs mom, stop here.

There are certain comments I hear all the time. “There’s a monkey on his binky!” “He’s sure cute, but looks like a handful.” “But he looks so healthy!” “Are you going to tell him he’s adopted?”

But there is one comment that just rubs me the wrong way every time I hear it. People observe me running after Patrick trying to keep him from pulling his tubes and will say, “Gee, that’s a clever leash.” Youch!

I’ve had a rather nasty cold this week and Patrick’s patience for staying around the house was wearing thin. So, since we had to refill one of his medications at the hospital pharmacy anyway, I decided we’d make a quick stop at the zoo. Lots of open air and room to run. Or so I thought.

Turned out, it was a school field trip day and the zoo was packed with elementary school kids and their parent volunteers. (In what seemed to be a 3 to 1 ratio.) This dramatic change in Patrick’s zoo-going environment threw him. He no longer cared about the animals. He wanted to watch the kids and spent the entire visit weaving in and out of the crowd. I, for my part, was left then with the responsibility of keeping a very close tail on Patrick because even with 3:1 kid to adult ratio, all of the kids were running wild and the odds of one of them snagging Patrick’s tubes as they ran past was very high.

Still, Patrick was more than content to practice climbing stairs and chase strollers and otherwise mingle. Then he spotted a group sitting on the lawn to eat lunch. Better yet, some were seated on a group of rocks that he’d never before considered a place to sit down. And so, away he went to join the group. He settled himself on a rock and motioned for me to do the same.

I’d just gotten situated, practically sitting on the ground, and untangled the tubes from around Patrick’s feet when I heard it..

“That’s a very convenient leash.” One of the adult field trip volunteers was beaming at me.

Now normally, I take the “Gorilla grin” approach to well-meaning-but-ignorant statements like this. (A gorilla appears to be smiling right before it attacks. So I muster all my frustration into a friendly smile, then exit the situation as soon as occasion permits.)

However, this time, Patrick seemed intent on staying on his rock. And my brain was all foggy with cold medicine. And so I thought that perhaps this was a good moment to help teach a little sensitivity.

“It’s not a leash. These are IV’s. He needs…” But I was cut off in my reply.

“Oh, I know. I used to be a nurse,” The happy woman told me. “What I mean was that it’s a convenient way to keep him from running away.”

My foggy little brain struggled for an answer. “I’m sorry,” I said. “We just don’t see them that way.”

Well, now the woman was starting to realize that I wasn’t as pleased with her observations as she hoped I would be and she launched into what sounded like a resume, listing all of the places she had worked as a nurse, including our children’s hospital.

Her dossier was interrupted, though, when Patrick took an interest in this woman I was talking to, which she interpreted as a request for food. “Oh, you want some of my lunch?” And she dipped a cracker into her half-eaten tuna salad and reached to offer it to Patrick.

“I’m sorry, he can’t eat that.” I said, and then shuffled him quickly on his way before he spotted the peanut butter another in the group was munching on.

But in hindsight, I so wish I’d had the clear-headedness and patience to say more.

Most of the time, I can shrug off the clever-leash comments by just telling myself that the person just didn’t know what they were looking at. But this woman had made it absolutely clear that she understood clearly what Patrick’s tubes were, and likely why he needed them.

And so I wish I’d had more courage. Courage to tell her that there is nothing convenient at all about intravenous feeding tubes. They are no more a handy way to keep my toddler from running away than another child’s wheelchair might be. In fact, the task of keeping Patrick from running to the end of his tubes is a full-time job that consumes a portion of my every waking moment. You see, if I let my guard down at just the wrong moment, his line could break costing him freedom, health, and potentially his life.

There is nothing convenient about that.

There is nothing convenient about telling a 3-year-old boy that he has to stay within 10 feet of an IV pump. That he has to rely on his slow, old mommy to keep up with his imagination. That when we play at the park, he can only go where I can go and as fast as I can run. That there are places he just can’t go because the tubes can’t go there either – like slides, and pools, and any playground that you access by crawling through a tunnel. And that I had just spent my whole morning trying to keep his tubes safe.

Worse yet, there seems to be something so wrong in implying to a child that his mother might willfully choose to connect him to a feeding tube to help to keep him in check. What message does that send to him?

Patrick’s tubes are a blessing because they keep him alive. We aren’t ashamed of them. They are just a part of who he is right now. And because we love him, we love them. We respect them. We take care of them. We need them. But they are limiting. And implying that I might enjoy seeing my son limited just, well, hurts.

And so, dear, friendly, former-nurse, room-mom.. I apologize. I am sorry for being too chicken to take the time to help you see Patrick’s tubes the way that I see them. I am sorry that I didn’t take the time to patiently teach you more sensitivity so that you could help your patients to learn to be proud of who they are, no matter what limitations they may have. I’m sorry for running away.

And I hope this rant helps answer questions for anyone else out there who might need help understanding the mysterious curly tube tied to a backpack.

April is National Donate Life Month

Our family had the incredible priviledge of being a part of Intermountain Donor Services’ (Yes! Utah) organ donation awareness kickoff event this year. It was an experience I’ll never forget.

We gathered in a conference room at the Salt Lake City Library. They’d pulled together a panel of transplant recipients, donors and donor families. Each took about 5 minutes and shared their experience with organ donation. Okay, okay. I spoke too. (You can a synopsis of the stories here: http://www.yesutah.org/content/story_7).

It was a pretty incredible experience and I was kind of sad that it couldn’t really be shared by more people. But Fox News ran this really nice piece http://fox13now.com/2012/04/08/donors-recipients-celebrate-organ-donation/. And a very kind reporter/photographer from the Salt Lake Tribune followed Patrick around like papparazzi (much to Patrick’s delight) and published this short, sweet article. http://www.sltrib.com/sltrib/news/53854564-78/utah-waiting-celebration-donor.html.csp

Patrick really got the spotlight, as it was his job to “turn on” the fountain at the donor memorial wall. (He knocked on the lid of the place a man was hiding waiting to turn things on.. When the man popped his head out, Patrick’s was intrigued and delighted.)

But the point of the whole thing, and where the spotlight really should be, is the need for organ donors.

Now, most of us got the speech about organ donation in driver’s ed and really, most of us have checked that box on our driver’s license. And you may even donate an extra $2 when you file your taxes to that mysterious “organ donation” fund available there. (Which, by the way, helps families with enormous post-transplant medical costs.)

But I’d like to challenge you this month to do a little more. Take your pick of the suggestions below:

1) Talk to your family about your wishes for organ donation. Just cuz your license is checked doesn’t mean it will happen. That choice goes to the next of kin. So let them know your intentions!

2) Talk to your spouse about whether your children should be donors. We don’t like to contemplate that possibility.. but one mom at this event said her husband didn’t know her wishes, and so for the hour it took for her to arrive at the hospital, he was worrying about what choice should be made.

3) Learn about living donation. Did you know that there are 400 some odd people waiting for kidneys just in Utah? One woman at the conference shared how she’d decided to be a “good samaritan” donor and how we all have this “extra” kidney for what good reason, if not to save lives? Did you know they can also transplant partial livers from living donors?

4) Learn about bone marrow donation. Brian registered a month or so as a bone marrow donor. Requested a kit online, swabbed his mouth at home so they can make a match. Someday he may get a call saying there is a life he can help save. I can’t wait till Patrick’s older and I can register as a donor, too.

5) Donate blood. Simple as that. I am so grateful for the blood donors who made the many transfusions Patrick has needed possible. It’s a pretty easy thing. And one adult can save many children’s lives.

6) Oh, and if you haven’t, go online and register as an organ & tissue donor. http://www.yesutah.org/ Here’s the link if you live in Utah. It’s a big yellow button. And it will take you less than a minute.

A new central line: Lucky 14

Before Patrick turned 2, he went through a dozen central lines. However, we finally learned how to protect his line from infection by using ethanol locks and lines seem to finally be lasting long time. In August 2010, we replaced a line because it had become clotted. And the following March, wired over that because it was clotted, too. That was lucky line number 13.

And, 13 months after it was put in, we finally bid Patrick’s longest line a fond farewell this week.

It all started Thursday morning when we were getting Patrick ready for school. We were all dragging because none of us had slept well the night before. Patrick had had an especially hard night, but was excited for school.

Part of the morning routine is to sit down and withdraw Patrick’s ethanol lock from his line. (Technical reminder – Patrick has a double lumen, or two-tube, line. His TPN runs through one lumen. And we put ethanol in the other lumen overnight to essentially clean it and prevent infection from growing there.) Only on this particular morning, when I drew back, expecting to draw ethanol and a little blood to tell me that the line was clear, I got TPN. Not just a little… I filled a syringe with it.

That’s not good. Those two lumens aren’t supposed to mix.

So, I called the IV team and they said what I suspected they would – Patrick would need an x-ray where they put contrast in the line to see where it went. Then I called the GI on call, a fellow named Dr. Varier who told me the same.

I packed a bag of toys and diapering supplies, thinking that worst case scenario we’d need to spend the night and have the line replaced the next day.

We headed up to the ER because they could do the X-ray, put in a peripheral IV to replace the TPN, and admit us from there if the stay needed to be longer. It was a fairly slow morning and so they were pretty quick and efficient getting those things taken care of.

Patrick was bored and restless there, as usual, and sleepy from a restless night. So I was grateful when he agreed to let me wrap him in a blanket on my lap and read him books. I didn’t realize at first that it was a sign he wasn’t feeling well..

But half an hour later, he started to shiver, and then started to cry in that scared “I know this awful feeling” way that comes with line infections.

I checked his temperature and it was still normal, but when the nurse came in to check on us, I told her he’d have a scary high fever within the hour.

The radiology tech showed up to take us to X-ray and Patrick screamed his way all the way through the study as his fever climbed. Sadly, the test confirmed what I knew… if you put contrast into one lumen, you could easily draw it out the other. It also showed evidence of a leak in the line that the radiologist thought was under the skin.

By the time we made it back to the room, Patrick had a full-blown fever and the nurse was more than willing to give him some motrin and put him on monitors. Thankfully, soon after my sister arrived with lunch from my mom. And when they came to place an IV to give Patrick fluids, she opted to stay to comfort him, even though it meant she’d have to hang around until her ride could come again.

I was so grateful she was there because the next hour was a flurry of activity. Based on the X-ray, they decided that Patrick’s line needed to be replaced right away. And they said that the nature of the break meant that it would likely need to be disected out of his body. (Broviac lines are tunneled under the skin of the chest. Usually to remove the line, you can just pull them out of the entry point… but with a broken line, if you pulled it it could snap in two, so they were planning to cut down the entire tunnel and lift the line out. When the surgeon came to get my consent for the removal, I asked them if they’d consider placing a line at the same time, possibly even wiring it over the old line and putting an IV in the same vein. She said she didn’t know, but let me consent to both procedures.

Then we hurried off to ultrasound to let the surgeons see what available blood vessels they could place a new line into. (Thankfully, Patrick’s motrin was working by then and he was calm.) When the ultrasound was over, surgery was in the room waiting to take Patrick.

So, we piled all of my bags and Patrick onto a gurney.. packed up the fluids and antibiotics there hadn’t been time to start… and hurried upstairs to meet the anesthesiologist.

Jill left us at the OR desk. And Brian texted to say he was minutes away.

While we waited at the desk, I made a hurried attempt to drain Patrick’s belly to reduce the risk of him aspirating. The anesthesiologist arrived and we started to discuss those risks.. But before we could finish the plans, the surgery resident appeared again with news – the doctors had changed their minds. They decided that the fever made it risky to put in a new line – and in the hopes that they could only have to take Patrick to surgery once, they were cancelling the procedure and putting him on the schedule for Saturday instead.

By the time Brian made it to us, they had found a room and were ready to admit us.

At first I was really upset. We knew this line was going bad and were ready to see it go. Still, it made sense to me to do what we could to attempt to wire over the line – and besides, Patrick felt awful.. and so we stayed. Every doctor and nurse seemed to have an updated version of the plan. I didn’t know at all what was going on.

With surgery cancelled, Brian headed back to work while I finished with the admission. And, because Patrick felt sick and hadn’t yet had a nap, we snuggled up in the hospital bed together.

Then the IV team came in and said that the break wasn’t under the skin at all, but at the repair site, and should be able to be fixed. I just shook my head – that didn’t seem right. But they said that it was at least worth a try, and so I agreed to let them repair the line. The head of the IV team did this one to make sure it was right.. still, he had the same problems as the 3 repair attempts before.. the line was leaky and didn’t flush right. Still, we hoped it would work well enough to at least draw blood cultures.

After the glue had a chance to dry, they used TPA to unclot the better performing of the two lumens and succeeded in drawing cultures. With the line working in at least one lumen, they decided to run antibiotics through it. (We didn’t even touch the other lumen that night because it has been so problematic over the past months that it seemed best not to push our luck by attempting to do anything with it until the glue had 24 hours to dry.)

And we waited. Patrick’s fevers stayed away, but then again, he was gettin tylenol, along with benadryl, to help combat his allergy to one of the antibiotics. He was more than content to just lay in bed with me watching Signing Time or reading books or sleeping, and I know all too well that a calm Patrick is a sick Patrick.

Friday that’s what we did.. just stayed in bed. Patrick seemed to be perking up some and having a couple of visitors helped. He lost one IV. (It was iffy and the sneaky nurse took it out while I ran upstairs to keep an appointment Patrick had scheduled with his rehab doctor, Dr. Gooch.) But they got another one in. Sadly, the 2nd IV require his hand be immobilized so Patrick just wouldn’t even try to use it. So I turned pages in books for him and helped to fetch the things he wanted.

Brian didn’t feel right about the radiologist saying the line was leaking, but the other doctor’s diagreeing with the results, so in morning rounds I asked them to review the x-ray again and tell me if there was or was not fluid leaking under Patrick’s skin.

Well, they came to a conclusion late in the day. I’d snuck away to a doctor because I was worried I was getting sick myself, so Brian was with Patrick when the team came by to say that the line was, in fact, leaking… and that they wanted Patrick to go to surgery that night to have it out.

So, I hurried back to the hospital as quickly as possible. Only to find that 3 trauma cases had just come into the E.R. and surgery was cancelled.

Meanwhile, they still didn’t have an explanation for Patrick’s fevers and so, with the glue dry for 24 hours, they decided to try to get Patrick’s other lumen working well enough to draw blood cultures from it. The first attempt didn’t yield many results.. and just before dinner, they put one more dose of the declotting agent in… And when they drew it out and flushed the line, Patrick started to cry.

Yup, that “I’m getting a scary fever, mom” cry again. I grabbed a thermometer and started watching. Within an hour, his fever had risen to 103.

The nurse gave him his prescribed tylenol as early as was safe. And the resident doctor happened by and saw how sick he was and prescribed ibuprofen, too. But that was all we could do. I stripped him down to a onesie and help him and sang to him until his fever finally dropped and he was able to sleep.

We knew then that the line HAD to go. Thankfully, Patrick was on the schedule for surgery the next morning. We did some fast talking to convince the surgeons that he could have a new central line, even though he was having fevers.

They took him to surgery a little after 11:00 a.m and he was back in the room recovering just after noon. The surgeon said they’d have “technical difficulties” placing the line, so he’d lost a fair amount of blood… But that otherwise things had gone smoothly.

Usually, Patrick is miserable and grumpy waking up from anesthesia, even for small procedures. I get called back to recovery to find him miserable and the nurse desperate for my help comforting him.

But this time, he was awake before I even got to him. He wasn’t exactly happy, but he wasn’t grouchy, either. He came back to the room and slept for the next couple of hours.. then woke up and asked me to sit in his bed with him. He snuggled right up and was – well, fine!

By morning, he was ready to be up and playing!

We have no doubt that it was the line making him sick and that as soon as the bad line was gone, that he felt better.

And so, with mixed emotion, we said goodbye to lucky line number 13 and welcome what we hope will be lucky 14 instead. They weren’t able to put it back into the same vein, for fear of infection (though nothing ever grew), and after seeing the ultrasound, I doubt we’ll get another line into that vein on the right again… But it is so good to see Patrick feeling better! Even his gut is more settled.

Praying this line lasts another year or more.

Brain matters

At long last, we had a look in Patrick’s brain last week. His MRI was done in January but the waiting list for his neurologist was very, very long. But I got a call midweek last week asking if we had time on Friday morning and we finally had a chance to sit down with Dr. Lloyd.

The scans actually looked better than I had imagined from reading the MRI report… nothing like the bit glowing spots you see on medical shows on TV. (Made me realize that they probably exaggerate those images to make it easier for the viewer to interpret what they’re being shows.)

The front portions of Patrick’s brain appear totally healthy. That means that his ability to learn and understand his world is completely intact. So is his ability to control his emotions.

But, as we’d suspected, those back portions do show damage. It’s called a watershed injury. What that means is that just like in a drought the crops farthest from the water source are the first to die because there isn’t enough water to reach them.. when Patrick’s heart stopped and his blood was being circulated by CPR, the areas at the ends of the blood vessels were starved for oxygen, and so they died and there is scarring in those places.

The result is what looks on the scan like a fuzzy white ring around the back third of Patrick’s brain. Instead of one big injury, it’s a mild/moderate injury spread out at the end of the blood supply.

We asked Dr. Lloyd about how this injury would affect Patrick. We weren’t much surprised by what he said. He said that injury would definitely affect Patrick’s motor planning. (By motor planning, I mean the way his brain sends signals telling his body how to move.)

He said that Patrick definitely has cerebral palsy. Because the injury is on both sides of the brain, both of his legs are affected. But, the right one (the one we brace) is definitely the one that will have the most problems because the injury is most severe on the left side of Patrick’s brain. He recommended that we continue with physical therapy and bracing to help Patrick’s ability to walk improve.

We asked if the injury would account for Patrick’s problems with speech, and Dr. Lloyd wholeheartedly agreed with our working diagnosis of apraxia. Again, although Patrick’s intellect and ability to understand are there, his brain has a hard time telling his muscles how to move, and so organizing the movements of his mouth to speak or his hands to sign is difficult for Patrick.

Dr. Lloyd did say, though, that he is very encouraged with how much Patrick’s brain has already been able to build new pathways. The fact that his right hand doesn’t show any signs of problems, despite that being where we first noticed the injury… and the fact that he crawls normally, even though at first he dragged his right leg… Those are signs that Patrick’s brain is adapting and learning to work around the injury. And he said that with continued therapy and school and help at home, that he expects Patrick’s abilities to continue to improve.

He told us that it is very important that we get Patrick working with an occupational therapist, something we’ve been leaning towards, but now know we need to make a priority.

Finally, we talked about Patrick’s vision. Apparently, the greatest area of damage is in the part of the brain that processes sight. We’ve been watching Patrick’s vision for a while now. We’ve noticed that he tends to get very close to things he wants to study, that he gets frustrated trying to work on puzzles that are too complicated and just can’t quite seem to sort out how to fit the pieces in. Well, Dr. Lloyd said that he would consider it very likely that Patrick has some degree of cortical blindness.

This doesn’t mean Patrick is blind. In fact, like the rest, it is likely that his eyes function completely normally. However, the signal in the brain might be confused or cluttered, making it hard for him to interpret what he sees. Dr. Lloyd recommended that we take Patrick to an opthamologist to have his vision evaluated, and he recommended that we talk to the school district about vision therapy.

I didn’t know they even had such a thing, but when I talked to Patrick’s teacher, she confirmed that yes, they do have a vision therapist regularly in the classroom. She also said that Patrick does act in class like sometimes he has a hard time seeing. She said he often leaves his chair to get a closer look at a picture during circle time, then once he’s seen, goes back to his seat.

So, we’ve got an appointment, though very far in the future, with a pediatric eye doctor and hope to be able to sort things out soon. In the meantime, I’m trying to be more mindful about being patient with tasks that might require sorting out a more complicated set of visual input… and I’m being more diligent in the eye exercises Patrick’s early intervention physical therapist were so certain he needed.

And that was about it. Dr. Lloyd said that the damage isn’t progressive, just scarring from an injury. There isn’t a risk of seizures that would cause further damage, either. (Whew.) But, he said that he wants to follow Patrick regularly for the next several years to make sure that he continues to improve. We’re on the waiting list again for another appointment, hopefully in 4 months.

So – not a lot of new information.. But it is comforting to know that our suspicions have been correct and that we have been doing the right thing for all this time. If anything, these diagnoses will help us to get Patrick even more of the help he so greatly needs.

What I liked about February

My last several posts have made February sound like an awful month. Here are some of the good things that happened in February.

1) Patrick started speech therapy. His new therapist is wonderful! Our previous therapist was very negative and critical when Patrick couldn’t attend well to a task. This new therapist is SO kind to him! She is very patient. When his attention wanders, she redirects him or allows him a change. When he throws things to get out of a task, she simply stops and waits for him to pick up what he threw. We’ve been using picture exchange with him, a method where he trades pictures for toys or games or activities he wants. It’s not words, but it is language, and it’s teaching him to respect and obey her. I’ve never seen him so attentive in therapy. Not only that, but in just our second session, she noticed that he wasn’t using the front of his mouth for most words. She taught me a simple physical prompt and already he’s improving his pronunciation.

2) Patrick discovered sign. I mentioned Signing Time, but I don’t know that I can emphasize this enough. In just a couple of days, Patrick learned he could use sign language where his words were maybe not enough. He is probably using at least 20 signs now, REGULARLY, to communicate what he wants and needs.

3) We learned to make Dr. Pepper chipotle pulled pork. This was the result of a Sunday sick at home. It was easy and it was SO yummy. And, it makes me feel like a much better cook because I know how to cook a roast in the oven instead of the crock pot.

4) We got to tour Papa’s work. Brian’s dad is an engineer in a company that manufactures printed circuit boards. They had an open house last week. It was really neat to see and learn about, and Patrick got an evening with one of his favorite people on earth, eat his new favorite meat: hot dogs… AND he got to play with a magnifying glass.

5) Patrick learned to tear. This is something they’ve been working on at school.. tearing paper. I know that sounds bad, but for Patrick, it means that he can now tear tortillas and bread or bread up chips into pieces that he can manage. This gives him much more control over his eating and is a HUGE step towards independence. Also this month, he learned to put his legs in pants. Learn to pull them up, and he’ll be able to do it all on his own. He learned this at home, not at school.. But in other school fun, a police officer visited the school and gave Patrick a toy police car and that made for a very fun week.

6) After several hours on the phone hunting down as much information as possible about the speech therapy bills that are still screwed up, I called the manager of that office again and got an apology from her! And a promise to personally follow up and fix the problem. And a promise to never, ever bill two separate kids of service for Patrick together again. Meaning I might just, maybe, kind of dare to consider going back to that clinic for physical or occupational therapy again.

I dunno, though. I’m on the fence for that subject. But the ball is back in my court. And that feels good.

7) We celebrated three years as an eternal family. The next day, we celebrated valentine’s day with cookies, candy, flowers, toy cars, balloons, and a quiet dinner at home.

8) Oh, and we finally made it off the wait list for the neurologist. Sorry to leave you with a cliffhanger, but the actual visit happened in March, and besides, deserves its own post.

So yeah, February wasn’t all bad. Still, I’m glad that particular set of trials is over and excited to see what good things March will bring.

Murphy’s Law: Weeks 3 & 4 – Lines, bellies and other worries

By the 3rd Sunday in February, I was dreading them. It seemed things always got a bit worse on Sunday. But I was doing my best to make the best of things. Brian was feeling less tired, but had picked up my sore throat and his tonsils had just about filled his throat, making it hard to sleep. So Patrick and I had made it through church on our own for a second week in a row, and we’d gone to Sunday dinner with my family.

On the way home, I decided we all needed some better time out of the house, so I called Brian and asked if he wanted to go for a drive. We live in the only place in the world where you can drive to 4 LDS temples in an evening, and decided that we would. It had snowed that morning and there was still a light dusting that made the temples glow. Patrick loved it, cheering “Mo’ mo’, ‘ple ‘ple” (more temple) from the back seat.

Snow is unnerving to a kid whose gait isn’t steady. Patrick was very proud to have taken these steps.

However, he also kept saying “scrub scrub”… which I thought was him just jabbering until we got home. I went to get him out of his seat and found his leg soaked in TPN. And when we got inside, I found that he’d bitten a small hole in his broviac line.

So, we hopped back in the car and to the hospital. They were able to repair the line, but with a caution that this was the last time they’d be able to fit a repair on only one lumen.

All seemed a little more back to normal. I was feeling better, except an ear ache, and Brian slowly was, too.

Monday was a peaceful day, mostly. Brian went back to work. I tried to catch up around the home. And that evening, we celebrated 3 years since having Patrick sealed to our family by visiting that temple one more time.

On Tuesday, I took Patrick for his first of what was supposed to be a series of free occupational therapy sessions at the community college. He’d been seen the week before and they were excited about all the students could learn from him.

We arrived a little late, partly because Patrick was not sleeping well anymore. (He kept waking up in the early morning thinking it was time to get up). So I’d let him nap long. And then there was an accident on the way.

But, they were ready for us.. we were only a few minutes late and I walked in to find – that the PT who wasn’t supposed to be available, was there in the session.

For the first half of the session, they watched him play. They tested his balance and his trunk strength and rotation and felt the muscles in his foot.

Then, they sent the students and Patrick off to work at a table, and they stopped to talk to me. Turns out, they’d discussed him earlier in the week and decided that his medical needs were greater than a student program could accomodate. They were especially worried about his nut allergy and about his g-tube being pulled out. They’d decided they couldn’t handle those emergencies. (And yes, I’m still baffled as to why they thought they would be the ones to handle them at all.) Anyway… in that one visit we went from a plan of free weekly OT and PT, to a promise to write a home plan for us and see him once or twice a year to update it, instead.

I was flabbergasted and didn’t know what to say. But on the heels of the rest of the month, I didn’t have enough fight in me to try to change their minds.

I had learned some things from the experience, regardless. Both of the professors/therapists agreed that what Patrick needs most right now is occupational therapy. They said they could see so many ways that a good occupational therapist could help him.. balance, attention, independence, and more could be helped.

And so, I came home and made an appointment with his rehab doctor to discuss how to start private OT, instead.

My ear got to bothering me and I finally saw a doctor, who prescribed me antibiotics and decongestants to get the fluid out of my ears. That is, after she looked in my throat and said she wouldn’t be surprised if I had a mild case of mono, too. Oh well, it was quick and easy and other than the drugs that made me jittery and stupid, made me feel better, too.

20120211_154108 — In the middle of winter, we had a day like spring, so Patrick and I went to the schoolyard to play.

In the meantime, Patrick’s belly started to get very upset. The worst it’s been since his last surgery. He went from eating very well, to barely eating, and started to never make it through the night sleeping. His output went through the roof and he just wasn’t himself.

Finally, Saturday I called his GI on his cell phone and requested blood cultures and a couple of other tests. With those started, we gave Patrick some ibuprofen, which seemed to help, and tried to get him to rest.

He ran low-grade fevers on the next Sunday. I did, too, but I think for other reasons. And then, he started to get better. He’s been up and down since then. Obviously, the bacterial flora in his gut is out of balance, but we don’t know if there’s something more.

Sadly, Patrick’s tests were still negative for mono after 3 days. However, after 6 days, his doctor called to tell me that they’d been positive for a bacteria called bacillus. We fought bacillus for several months a couple years ago.. finally shook it and learned later that there had been some contaminated alcohol wipes. But it also grows in old restaurant rice. So there is a chance that Patrick picked up the bacteria from rice.. after all, it’s one of our favorite foods.

So we drew labs again. So far as I know, though, those were negative. It’s highly possible that the first positive was a false positive, an accidental contamination that happened in the lab. We just don’t know. I kept the suitcases packed for 2 weeks to go to the hospital. Finally unpacked them today.

In the meantime, I let myself get distracted one morning while Patrick was playing and didn’t notice he’d gotten his tubes caught around a kitchen chair. He wanted a toy and pulled, HARD. He broke the Y in his tubing, his safety pin, and…. his repaired line.

So, we spent the rest of that Monday at the hospital. They tried to repair the line, but it didn’t go smoothly. First, as we’d been warned, they couldn’t repair just one lumen. We had to shut off the TPN so they could cut both lumens. Then, once the repair was made, the line didn’t flush well.. the repair segment seemed off. And so, instead of going home as we usually would have done, we waited for the glue to dry.

Patrick now asks to wear a hairnet and masks like everyone else.

Patrick didn’t seem to mind this much. Tube free in the hospital and free to play? We shared a hot dog in the cafeteria. Then went up to the playroom to play. We stopped in the gift shop for a box of sticker books. Then he practiced climbing up and down the stairs for a while. And finally, we came back to the room for a nap.

But the line still didn’t work once the glue dried. So we waited through thre 30 minute rounds of TPA (declotting agent) with a nurse who was obviously not comfortable with central lines. (My favorite quote was, when she asked me if cleaning the line with alcohol wipes was ok while just brushing over the line with one. I said yes, but we scrub for 15 seconds. Hospital protocol. And she said, “Oh, you count?” At least she did it again the right way.)

Anyway – around 7, IV team came back and was brave enough to actually work the line until it flowed. And at 7:45 I threw a fit about it taking too long to discharge us. We got home to TPN by 8:30 (thanks to a motivated daddy).

The line still doesn’t work quite right. It doesn’t draw well. In fact, one side doesn’t draw at all, unless Patrick’s got one hand above his head. The home nurse said it’s “positional”, or in other words, that maybe he’s outgrowing it, pulling it farther back into the vein so it sticks to the vein wall when we draw, unless he changes it’s position by lifting his arm.

I’m still torn as to whether or not to keep trying to work with it or talk to the surgeon about replacing it while we still have the option of wiring over it.

So we ended the month much healthier and with working cars. We don’t have occupational therapy yet, but know a direction to go in at least. We have a line that we can give TPN though, even if only one side draws. Patrick’s belly is still not quite right, but I’ve switched draining methods at night again and belly aches aren’t waking him any more. His output isn’t perfect, but it’s trending downward. Things are returning to normal again.

It snowed in the valley Saturday night. The snow cleared all of the smog out of the air leaving this fresh and beautiful and new looking. To me, Murphy was also washed away with that storm. February is over and we are starting fresh with new direction and new opportunities this month. Already to me, after the lions of February, March feels like a lamb.