Archive for May, 2014

Breathe in. Breathe out. Repeat. We've got this.

Breathe in. Breathe out. Repeat. We’ve got this.

So, it’s an interesting thing, being a special-needs parent. Sometimes, it means we get to witness the most inspiring moments, like seeing Will walk down the hospital hall today, determined to get back on his feet, despite the fact that he was clearly still in discomfort. Sometimes, it means we feel like those punching clowns people hit and hit and hit just to see them come back for more. This afternoon, for example, we found out that the formula Will needs to be on will cost $600-$700 a month, and insurance doesn’t cover it because, “You’d be feeding your child if he weren’t on formula.” Right. That makes perfect sense…if you don’t really stop and think about it. At all. Yeah. You can bet we’ll bounce back to that conversation.

In tough times like these, I try to remind myself of a David Allen quote (and I honestly have no idea who this dude is beyond the person who said this one thing one time that I really like*), “You can do anything, but not everything.” Damn right. This little marble of brilliance has gotten me through some really challenging moments. I have a tendency, as do so many people, to try to do everything and be everywhere for everyone, every day. And of course, this is an exercise in futility because it’s literally not possible in any way, shape, or form. Marty does it, too. Maybe it’s inherent to special-needs parents after a while. I don’t really know. Anyway, when Marty’s in full-speed mode, he’s fond of quoting Warren Zevon, who sang, “I’ll sleep when I’m dead.” What can I say? We’re different…and we’re alike.

Anyway, these are the rambling thought nuggets pinging around in my overloaded brain at the moment as I listen to a storm roll in while Will is taking his first bolus tube feed, watching Finding Nemo, and playing with two iPods simultaneously, including playing the Avett Brothers repeatedly. Talk about trying to do everything. He’s a pro.

Go, Will!!

Go, Will!!

He’s also a pro at school. I’m proud to say that Will’s teacher, who is such an incredible woman, came to visit this evening and brought Will some surprises, including cards from his buddies at school and….drumroll please….Will’s very first Littlewood Leader award! This is a, “Citizen of the Month” type of award that Will has never received in his five years at Littlewood. What a great surprise with fantastic timing! We were certainly due for some happy news after the tough day we had.

It started out ok. Will got to sleep through the night, as they were finally able to hold off on all the vitals checks. The nurse came in periodically to add formula to Will’s bag (it’s kind of an IV setup that runs through a feeding pump), and she pushed Motrin through the tube, all without waking Will. So that was great. First thing in the morning, we had a blood draw, which is much much much much much less horrible now that he has this PICC line so there are no needles involved. Did I mention it’s better? Seriously. Better.

Then it really started. Before Marty even arrived for the morning, and the man was here by 8:30, we were in a bit of a crisis. I had met with the doctor for our morning goal-setting and review. We had drawn labs, as I mentioned, and I had even found a moment to brush my teeth. But then the nurse rushed in with blood-drawing gear, telling me she needed to re-draw the morning’s labs. Will’s potassium came back at 6.3. That’s high. High is bad. If 3 is the low end of normal, and 5 is the high end of normal, that told my non-medical-person-brain that a 6.3 was as high-bad as a 2 or so is low-bad. Plus, she had that very determined nurse face on that lets you know in no uncertain terms, We have to deal with this right now. 

Even better <sarcasm, really big sarcasm> was that we now also needed an EKG to check Will’s heart. That’s not something you want to see someone do to your 9-year-old. Seriously. Their little hearts are supposed to be perfect. So we’ll just say that was pretty much horrible but at least not painful. Around this time, the pediatrician’s office called for an update, so I had to hang up on Marty to fill them in, and then the Occupational Therapist (OT) came to get Will up and walking around the halls.

Then my friend Sharon showed up with coffee. That’s right. I handled that without coffee. No, I don’t know how. Marty had arrived by then, and we were waiting on the lab and EKG results while we ate Panera. It was such an oddly normal thing to do, eating bagels and eggs while waiting on a scary medical test. But that’s what we did. And then the Resident came in and told us Will’s potassium was totally normal. 3something. Completely not high and fine. Five minutes after the EKG I will probably get billed $1k for, but whatever. I’m trying really, really hard not to think about what 9 days in the hospital costs.

Chillin' with a big Will smile!

Chillin’ with a big Will smile, Blankie, and our tubie bear, Brooks, off to the right

The Resident explained that potassium is very temperamental, and if blood isn’t tested quickly in the lab, it can do some sort of hoobadoo and get all funkified and then the potassium looks higher than it actually is and then you have a little heart attack thinking your kid has high potassium and ohmygosh now we’re going to be here another week and why do we need an EKG right this second is he going to die? He didn’t say all that last part. And I’m pretty sure he didn’t say, “hoobadoo,” but I honestly stopped processing information after he said Will was fine. Fuck you, potassium.

Also on the good news front, the throat biopsy taken during the upper endoscopy portion of Will’s surgery on Tuesday came back negative, which in doctor language means good, which sums up everything I need to know about medicine: it’s just some kind of Bizzaro World. But I digress. We also found out Will doesn’t have Cushing’s Syndrome, which I swear they scared the living daylights out of us with yesterday because some hormone levels were wonky and they really, really could have just run the tests without telling us Will might have a massively scary disease that probably wouldn’t kill him, but in my head already had. (And of course, yes, in reality I want to know everything that’s going on, but that was really stressful.) Also, when Marty and I used to watch, “House,” it was ALWAYS Cushing’s when there was no other answer. And Cushing’s looked BAD.

So in the midst of all this craziness, we had an OT evaluation and got a PT (physical therapy) referral due to Will’s depleted state. I’m sure her report sounded way more official than that, but basically, he’s lost a lot of muscle and needs strengthening. He’s walking like a hunched old man or a woman who just had a c-section, yet still trying to run, while walking on his heels and favoring his left side where the button (tube site) is, and he has lost weight. Today, after two days of continuous tube feeding, my 9-year-old weighed in at 22kg. For you normal people, that’s 48.5 pounds. Yes, I had to look it up after they weighed him to figure out the pounds. He’s below the 3rd percentile for height and weight. For comparison’s sake, the average boy Will’s age weighs over 61 pounds. Losing five pounds makes a huge difference when it’s 10% of your body weight.

What else …  PT came by and made Will walk around some more; the pediatrics team came to do rounds and present to the Attending, who discussed medication changes and dosing and all that. Our wonderful, awesome, spectacular Tube Feeding Fairy came by too. Twice. And you know, I’m sure she has a boring title, but it’s late and I don’t feel like looking it up. She’s the nurse who teaches people how to manage g-tubes and tracheotomies and things like that at home. And she’s rad. She was followed up much later in the day by the DME people (that’s durable medical equipment for those of you lucky enough not to be familiar) who brought us our very own feeding pump and a mini IV stand to take home. Just what I always wanted. On the plus side, we have all our gear to go home with, so that’s a good start.

Somewhere in the middle of all of this Cathy Zenko from the Center for Autism and Related Disabilities (CARD) came back around for a long visit. She stayed long enough to get to meet everyone who has asked me how to improve the floor for kids on the spectrum, and she went off to do her own super fabulousness with them. She was already looking into this issue when Will was admitted, so now they have a bit of a case study to work from. We sat and I rambled on for ages about what does and doesn’t work from my layman’s perspective, and so, hopefully, in some small way, we are paying forward some of the kindness and grace that is coming our way. Our experiences may ultimately lead to improvements here at Shands Children’s Hospital that will help make this type of admission easier for kids with autism. It seems there is always a chance to pay it forward if you look for it.

Every. Single. Day.

Every. Single. Day.

It also seems there’s always something to be grateful for. Today, I’m grateful that Will is making gains. He showered today and walked the hall three times. He laughed. He smiled. He got to see Julia briefly when she arrived into town. He achieved his feeding goals for the day. He pooped some more. Hey, it’s a big deal. They don’t let you go home if you’re not pooping. Yay for poop.

I’m also so grateful for all of the loving support our friends and family are providing. I am comforted in the knowledge that people are lifting our family up in prayer all over the world. I’ll be honest. I go back and forth on religion and all that goes with it. But recently, I felt like G-d reappeared in my life. Or maybe I just started paying attention. Whatever the case, I am certain that we are not alone in this at any moment. My little beat up family of punching clowns won’t stay down for long. We’ll pop back up quickly. We’ve got this.


*Ok, also, it turns out David Allen is a dude who makes a living telling other people how to tell other people what to do in his branded $600 a day seminars while he’s in Ojai with his fourth wife. Not that I’m judging…But isn’t that trying to do anything AND everything? Now I’m confused. I need a new quote.



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how strong you areSometimes, I feel like a frog that’s lost a leg. A frog can survive with three legs even if it’s used to four; it just needs to learn how to hop and move and live within its new parameters, its new normal. At every major challenge in life, it seems to go this way. I get crushed a bit. I lose something precious or gain something unexpected or unwanted or am faced with a big unknown. I have my moments of breakdown. And then I put on my big-girl panties and get on with it. Because really, what other choice is there?

Will is very much the same. He has been knocked down by things. He’s been injured and sick and beaten down by his own little body time and again. Infections, injuries, self-inflicted injuries, the stress of maintaining his autism- and OCD-fueled world… it’s all HARD. It’s WORK being Will. But Will is a fighter. He pulls himself up by his bootstraps and moves on. Every time. Every day. He’s the bravest person I know. He’s my hero.

So, we’ve been in the hospital a week now, little (partial) family of three-legged frogs that we are, and we have adjusted to our new (very ab-) normal of hospital life. We’re hoping this never feels totally normal and we head home soon. On Tuesday, surgery day, they predicted we would go home Friday, but now, Thursday, they’re saying Saturday, and I’ve learned that, “probably Saturday,” more likely means Sunday or Monday. Whenever it is, it is. We’re here as long as Will needs to be here. It’s as simple as that.

This is what a G-Tube looks like on the inside. The mushroom-shaped portion is inside Will's stomach, and the blue tube connects to the little pool-inner-tube-looking valve thing on the outside. The blue square closest to my fingers is a separate piece, the end of the tubing through which his food flows.

This is what a G-Tube looks like on the inside. The mushroom-shaped portion is inside Will’s stomach, and the blue tube connects to the little pool-inner-tube-looking valve thing on the outside. The blue square closest to my fingers is a separate piece, the end of the tubing through which his food flows.

Once we get home, though, we will most definitely have to learn to hop again, because there is nothing normal about any of this stuff. Tube feeding is much more complicated than I thought. I figured we open a port, plug in the tube, syringe the food, close the port. That’s not hard, right? Wrong. Way wrong. Tube feeding requires multiple steps, constant cleaning of both the button (the port site on his abdomen) and all the stuff that connects to it. There’s a lot of “flushing” of things and clamping and washing and measuring and charging and priming and … and … and…

Plus, we haven’t even gotten to the logistics of HOW we’re going to manage this whole thing. “Bolus or continuous?” they all want to know. Marty and I are pretty much saying, “Bolus or continuous WHAT?” and “Aren’t you guys supposed to tell us?” It feels a bit like when you get home with your first baby, have your first (really horrible) night, and you look at each other and say, “Now what?” There’s no real instruction manual, yet you can’t just wing it, either. So this is a time of asking for help and demonstrations and then more help, more demonstrations, and over and over until we get all of this information through our very sleep-deprived, overloaded brains.

It’s also a time of staunch advocacy, because although the wonderful folks at Shands Children’s Hospital are pediatric experts, they’re generally not autism experts. And surprising as it seems, a good percentage of the medical personnel don’t seem to have much experience with kids on the spectrum. Doctors? Yes. But some of the nurses and assistants really have no idea how to accommodate Will. This has led to some really interesting conversations with folks from the Child Life team, the nurse managers, the social worker, and some other folks. I think we’ve been able to pay it forward a little by walking these receptive professionals through what does and doesn’t work about their current setup when it comes to a kid with autism, specifically one with real sensory challenges. I’m very hopeful that some of what we’ve discussed will help make this journey a little easier for the next family like ours.

Beyond all the advocacy, case management, phone calls, coordination, service requests, and meetings with doctors, nurses, social support people, tube feeding specialists, nutritionists, med students, and on and on, we’ve also, and primarily, been focused on Will. He has been on a continuous feed of this special formula since yesterday afternoon. It looks like milky water and can provide all the nutrients he needs in a given day. It’s meant to replace or supplement oral feedings. So yesterday and most of today, they had him on that and an IV, with nothing by mouth. The goal was to get his system acclimated to receiving nutrients by tube and to ensure that his tube site didn’t get overly stressed in the first 48 hours of healing.

We had a small procedure this afternoon. Will had to have his PICC line re-bandaged, and while that doesn’t sound like a big thing, it really, really is. Our poor little guy was held down by four adults, Marty and me included, while a nurse removed all his old bandaging and replaced it. This stuff is meant to last several days, so it’s all adhesive-d onto his skin, and that was … unpleasant. But he did walk down the hall for the first time, and that was scary yet fantastic. He’s weak in the knees and unsteady. For those of you who know Will, you know it’s like seeing a bull in a tutu.

By mid-afternoon, Will was really hungry and was demanding pretzels. He got out of bed (insert image of me chasing him around the bed with an IV stand so he doesn’t pull out all his gear) and wobbled over to a chair where he sat down. I thought this was pretty awesome until he took my hand and gestured toward a bag of his pretzels, which I was absolutely not allowed to give him. So we talked about it, and then he proceeded to get up and reach for the pretzels. Another talk. Then he took my iPad, opened the photos app, found a picture of himself eating pretzels, and put my finger on the pretzels. Like, how many more ways do I have to tell you, Mom? I want pretzels. Now.

Pretzels, apple chips, water, and Mommy's iPad. It does not get better than this in the hospital.

Pretzels, apple chips, water, and Mommy’s iPad. It does not get better than this in the hospital. He’s generally shirtless at the moment so nothing irritates his “button” while it’s still sore.

Then, at the same time, Will was in pain, and he curled up in my lap, something he hasn’t done in ages, burying his head in my chest. He was upset and tired and sore. I had the nurse get Will some Motrin and page the doctor. We talked about increasing the tube feed or adding solid food, discussing the options. He went to discuss it all with the Attending, who brought Peds Surgery into the conversation. Ultimately, our favorite neighborhood med student (seriously, guy is awesome) came by with the good news: Let Him Eat (but not cake). 

Will immediately ate a bowl of pretzels mixed with apple chips and drank a big cup of water. He smiled. He laughed. He was HAPPY. And it was AWESOME. Not long after that, Will got up and went to the bathroom. I won’t get all detailed here, but those of you who have potty trained a child and experienced that first poop on the potty will have some idea of the happy dance Marty and I did. That poop gets us one step closer to going home.

With Will eating and drinking, he was allowed to get off of his IV. So now he’s only hooked up to the g-tube feeding pump, as they will keep pushing the formula that way all night. Hopefully, no one will bother him all night and they’ll just let him rest. I’ve been asking absolutely everyone to put it in their notes that no one should wake Will unless absolutely necessary since yesterday morning. They have to check on him. It’s imperative. And there comes a point at which you simply need to let a patient REST. With so many caregivers involved, I think it’s a very hard thing to balance, because they each have to come in to do their separate parts, but I just want 6 uninterrupted hours for him so he can actually feel rested and get a break.

We learned a lot more about tube feedings today, and in another world, Julia had her school’s annual field day. She’ll be here with us tomorrow. Friends came and went, dropping off food and giving great hugs. We hardly stopped for a second. But that’s ok. We need to keep moving. Onward and upward. Forward…hop.

Goodnight from Will and Brooks!

Goodnight from Will and Brooks!


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