Thursday, January 28, 2010

March of Dimes

In case you hadn't guessed, we like supporting preemie related charities. Last year was our first year walking in the March of Dimes March for Babies. While I didn't overly enjoy walking all by myself, we did raise a couple hundred dollars.

So, if you've got a little extra cash, I'd suggest donating - they do good things to help out preemies and their families.


Sunday, January 24, 2010

DIY Play Therapy

Acorn is apparently in one of those anxiety-prone phases that toddlers go through - just before Yule, he started having what appeared to be nightmares. Instead of our nightly ritual of jammies and a story and laying down (and being asleep within five minutes of us walking out), he started crying when we'd close the storybook.

However, add to the normal toddler anxiety and nightmares, our trip to Florida (with sleeping someplace new and our rather messy accidental decannulation), getting sick the very next week, and the fact that said ER visit resulted in an overnight in the PICU, and you've got the makings of an emotional mess.

And that'd be a mess even for a typical kid...Acorn has still been in the hospital more days of his life than out (though we're quickly approaching the tipping point there - assuming we avoid any more in-patient days, February 9 will be the day he's been out of the hospital as many days as in. He's already got a fear of anyone wearing blue gloves (and even my dad, who has his own share of emotional issues, remembered that while we were in Florida). He sobs when anyone tries to use an under-the-arm thermometer, or take his blood pressure. He's afraid of the pediatrician's waiting room right now because he's in every 28 days for synagis - and two shots of it each time, much less the 15-18 month vaccines and flu shots (all 4 of them) he had this fall.

Needless to say, we've got some serious anxiety going on right now, and since we know there is surgery in his future, it's only going to get worse.

So, what to do?

Well, some friends have suggested cranio-sacral therapy, and we'll probably look into that. But for the more immediate term, it's play therapy for Acorn.

Today we bought him a doctor's kit (Fisher Price brand) - it looks like this:



It's got all the things he is most afraid of - blood pressure, thermometer, syringe for shots, otoscope, and a stethescope. We're sure that all of the day-shift nurses will help us by playing with Acorn with these - checking the temp of various stuffed animals, the housekeeper, etc.

Beyond that, though, we are working on either modifying one of the stuffed animals here, or going to one of those stores where you create a stuffed animal, and adding a trach and a g-tube to the stuffed animal.

We're hopeful that this desensitization and the role playing it allows will help with the anxiety he feels.

Friday, January 22, 2010

It's all about balance

Balance is one of those things that Pagans often talk about in terms that suggest it's a place you go, rather than a constantly changing state.

One of the things that most special needs parents eventually learn is that balance is an ever-shifting point of reference. It's something you strive for, but rarely something you actually achieve, because in a minute or two, a piece of eqipment will alarm, or your child will have a melt-down, or some therapist or doctor will call and change your carefully crafted schedule of appointments for this week, as if it means nothing to you.

It's often hard to remember, but we have to remember to factor our own needs into the balance equation. While we can ignore them in the short term....there are long term consequences to not taking care of ourselves. We get grumpy, short(er) tempered, and we're not at the top of our game.

And believe me, when you're coordinating 7 nurses, 3 therapists from one agency, 3 more therapists and a teacher from school, a pediatrician, and 5 specialists just for your child (not to mention anything you might need to do like work or your own health issues)....being on top of your game is a necessity.

What I've learned recently: if you want to have time for yourself, you have to plan it, and make it happen. And you can't plan it and then do the dishes....that's just not good self-care.

We're trying to work out how to get away for a weekend, or even part of a weekend. It means asking for help from friends and family, and scrimping nursing hours, but it looks like in March we might manage it.

I, personally, have realized that giving up my dreams of being an artist and business owner a couple years ago, while necessary at the time, was not a good long term self-care strategy. It's too hard to balance without a little something for myself.

So...I'm photographing jewelry and other art objects. I'm opening an etsy shop. Maybe things will sell, maybe they won't, but it's an inexpensive way to get my stuff out there. I've updated a couple of my old websites, and closed down the rest. And I'm making stuff again, which has always been a great source of peace for me.

Sunday, January 17, 2010

Traveling with your own portable field hospital

So yeah. We went to Florida for my brother's wedding over New Year's. We took Acorn. Some people were astonished, others in awe. No one really said, "you know, you should probably re-think this whole idea, because it's crazy."  And even if they had, we wouldn't have believed them.

Frankly...we weren't ready to leave him behind.

We're still not to the point where he's been out of a hospital more days than he's been in one (though we're getting close - we extended the number of hospital days by a day this week, but we're within a month of making it). We have no family willing to take on learning how to care for him - Acorn's grandmas and grandpas won't even suction him, much less do anything hard. So our only option other than bringing him along was to leave him here with nurses 24/7...and we have a hard enough time keeping things together when we're both here every day that it seemed like a recipe for disaster to leave them in charge of him for 4 days.

Besides, who leaves their kids at home when they go to a big family event?

There was some marital strife in getting things organized - do we take the car seat on the plane? I didn't think so, but Big Oak intended to do just that, right up until 2 days before the trip. He also didn't really understand the meaning of the phrase "formal attire requested" on the wedding invitation.

In the end, we purchased a CARES seatbelt system (no compensation for this link - we bought it locally, and I'm just telling you my opinion about it). This turned out to be a fabulous idea. The car seat got checked (for free). We put Acorn in the airline seat, buckled in quite calmly, and he sat through both flights with no issues. He did get up during each flight to climb between our laps and flirt with the flight attendants, but expecting anything less from a toddler is just silly.

The reason this was such a great device though, besides it fitting neatly in a corner of my tote bag and containing Acorn for takeoff and landing, was that there really was no way we could have managed his car seat on the plane.

We had 2 carry-on sized suitcases of medical supplies and equipment. We had the backpack sized oxygen concentrator. And we had 2 backpacks - one for "immediate needs" like diapers and suction, and the second for "emergency backups" which included the emergency trach bag, ambu bag, spare clothes (have I mentioned that Acorn pukes several times a week still), and the backup battery for the oxygen concentrator.

You'll note there's nothing there for us, and no toys, food, bottles, or clothes.... We did each have a bag to carry on, and mine was half full of toys and bottles. *sigh* It's a good thing my computer is so tiny.

Carrying all this stuff through security in Detroit was no big deal. They have a screening line for families and people with medical needs, and they knew what they were doing.

Getting home from W. Palm Beach was not as smooth - no special line, and they didn't know what half the stuff was.

At any rate. One thing that we didn't really realize was that at home, everything is laid out. If we go out for the afternoon we take a duffel bag that is packed at all times. Things are in their places here, and everyone knows where to find everything. We've got cable management set up for all the power cords, and things have been sort of arranged based on usage.

While out of town, however....every time we left our room, we had to re-pack. How long would we be gone, what equipment would we need, what meds? Every time we went to do a normal routine care bit (changing trach ties, or cleaning Acorn's g-tube) we had to search through the bag of supplies to find what we needed.




We also didn't have the ability to just throw things in the wash when he puked, so we had a lot of things hanging over the side of the bath after they'd been rinsed out.




The biggest "real" problem we had was the lack of a break - no one there knew how to care for Acorn, and no one was willing to learn.

So, when he accidentally pulled his trach out in the middle of a night terror after we'd all gone to bed the first night...and he didn't turn blue, so we didn't figure out right away what the issue was....and an hour later we had nearly called for an ambulance after struggling for several minutes to get the smaller "emergency" trach in....

...we had no one to keep an eye on him while we napped the next day, and no one to sit with him when he was up at 7 the day after, and we couldn't stay awake.

We finally gave up on the ventilator our last night there. He was only supposed to be on 2 hours, and the night before it'd taken almost an hour and a half to get Acorn untangled, disconnected, connected to his nose, and then, because that had woken him up, back to sleep. There was no way I was spending more time messing with him than he was going to spend on the vent, and he slept just fine without setting off the pulse ox once.

The other thing that was really exhausting, besides hauling stuff from the hotel to the car to events and then back again was the questions. We take Acorn out a fair amount, and little is ever said, but for whatever reason, every place we went people had to ask "what's wrong with him" and other things like that, and it got tiring to answer over and over again.

When Acorn puked at the wedding, the facilities manager got upset and tried to make us go to the ER for an evaluation for a concussion, because he'd fallen and hit his head earlier. Telling her that he vomits regularly just made her more concerned, because "kids don't just vomit" - ours does, and this is so much less vomiting than he used to do that we're not even concerned, other than the fact that people won't let us actually clean him up.

I didn't manage to get a photo of the stroller with all the suitcases on it, but we do have this one from just before the wedding, with about half the bags on it that were on it during most of the trip - that's me, Acorn, and Big Oak in our wedding finery. I worry about our poor stroller, and hope it holds up, but we bought it used so I suppose if it falls apart, it's not such a huge loss.



So, the moral of the story:

Traveling with a trach kid (especially one still on oxygen and a vent) takes way more equipment and supplies than it seems like it should. It's also exhausting in a way that few other things have been on this journey of ours. Would we do it again? I'm not sure - we're still thinking about that. Maybe if we had a couple days off when we got back where we had nursing most of the time so that we could catch up.


Had our first night not been so messy, or had we had a day off when we got home, we probably would have been fine. Instead, we had 4 days of early morning doctors appointments in a row when we came home, and Acorn and I both caught a respiratory bug the weekend after the trip. We're only now feeling mostly better, and I am still behind on sleep.



Even so, we have already made plans for a very long day with no nursing next month to take Acorn to a powwow (my family is Lakota/Sioux, and I want him to have connections to the culture), and then to movie night at a friend's place, all of which is about 90 minutes from home. But there will be a nurse here when we get home, and it won't be 3 sleepless nights in a row.

Tuesday, January 12, 2010

sometimes there's only so much one mom can do

I'm sitting here in Acorn's room, with the lights dim, long after he should be sleeping. He's been sick since Friday, and between the albuterol and the prednisone, he's kind of hyper. And we hadn't really gotten back to a normal sleep schedule after our trip, so sleeping isn't working out so well right now.

To add to it, I've been sick since Sunday. I called in sick to work yesterday thinking that a day to rest up and take it easy would cure my sore throat. It did....but the germs moved out of my throat and into my chest. I'm taking just about as much  albuterol as Acorn is, and considerably more prednisone.

And I still feel like complete and utter shit.

I would like nothing more to be in bed right now, but it's Big Oak's night out. And honestly, I *was* feeling somewhat better this afternoon, so I didn't think this would suck quite as much as it does right now. But you know it's bad when you put on your kid's favorite movie so that you can go get your own meds so that you can stop coughing long enough to not pass out so you can give said child his meds.

Which, an hour after starting this post, I'm doing because he still isn't asleep, and he started wheezing. Of course, he spilled half of it, and then promptly went to sleep.

It's nights like this I really wonder about the sanity of this whole situation. But right now, I think I'll just crash here on the couch for a nap - both the night nurse and Big Oak are due within the half hour, and I really do need to go to work tomorrow after 2 days at home.

Monday, January 11, 2010

Diapering on the road

We haven't ever bought disposable diapers for Acorn. He had them in the hospital, for several very good reasons. And we brought the leftovers home. But we've never used them - the first thing we've done upon arriving home from each of his four hospital stays, once things are all put away and settled, is to put him in a real diaper.

Traveling cross-country with a toddler is a challenge all by itself. Doing so with a special needs kiddo (and his several suitcases of medical equipment) is an even bigger challenge. So why would we even think about complicating things by adding cloth diapers?

Because we're used to them, so they're not an added complication. They're just part of every day life, kind of like the trach, the suction machine, the g-tube...

Our trip was 4 days, 3 nights, and most of 2 of those days were spent in airports or airplanes. Not knowing what the laundry options would be, we planned to rough it - we purchased birdseye flats (mostly unbleached Little Lions, with a few no-brand), used, on diaperswappers.com. This way, if necessary, we could hand wash diapers in the room, and dry them overnight on every available hanging surface. We also packed our trusted Thirsties duo wraps as covers - the hardest thing to dry on them is the aplix across the front. We got the Bummis flushable liners to help keep poo from soaking into the diapers  (bought locally from a diaper store). We packed 4 pockets for use on the plane ride home. Finally, we compromised and dug into our stash of disposable wipes (in travel sized packs, from the various hospital stays), largely because I didn't know how well they'd wash.




The first day was a travel day. We left home at 6, got to the hotel around 2, and went straight to the rehearsal dinner, returning to the hotel around 8. In that time, we had 4 wet and one dirty diaper. I decided to wash by hand rather than searching for another solution, because we were all tired, and I was afraid to let the hand washing go too long, for fear it'd take me all night:





In typical Acorn fashion, we also had to strip the bed that night, and him, because he puked all over it while I was doing diapers, so the clothes all got rinsed & hung in the bathroom (diapers aren't in this picture, but they were hanging from every towel bar, the shower curtain rod, and the shower head itself)



The next day, I learned that the hotel had laundry facilities. Since we were heading to the wedding, and getting back late, we opted to skip washing diapers that night in favor of throwing them in the washer the next day. Which we did.

We then had diapers from Sunday afternoon and night to bring home dirty, and enough pockets to get us out of the hotel that last morning, onto the plane, and all the way home. Of course, Acorn pooped in the first pocket before we even left the hotel, so we had to carry a very stinky diaper all the way back from Florida.

All in all, it really was no big deal. I liked having flats - trim, easy to carry, and secureable with one pin, which is always good on a squirmy boy.

The only problems with hand washing were (a) I forgot to bring gloves to make it easier on my hands, and (b) the midnight nurse insisted on putting calmoseptine on Acorn "just in case" he developed diaper rash (I guess she was worried about us driving to the airport?), and I couldn't get that washed out by hand. It came out just fine in the front-loading washer in the hotel though.

Would we do it again? The diapers, sure. The traveling with a medically fragile kiddo.....that's another blog entry.

Not our parenting choices

I should write about the trip to Florida - about cloth diapers and traveling, or about how my dad actually did something I never thought I'd see, or how crazy it really is traveling with a trach kid and all his stuff. And I will.

But what's really on my mind is parenting, and the choices we (and other people) make, and what our kids learn from watching us make those choices.

A parent we know has two daughters - both are in middle school, and one is starting high school in the fall.

She's the kind of mom who puts toddlers in front of the TV, because playing on the floor with them is "beneath" her.

I was floored several months ago when I overheard her tell Acorn that he should plan on growing up to be a football star, because they make lots of money. Besides the fact that frankly, a kid with his lung issues is not likely to be a sports star, and the fact that the odds of even a *good* football player becoming a pro are still slim....money isn't everything.
 
I'm in a position where I make enough that money isn't an issue in our house very often these days (and when it is, it's usually because we did something silly). I grew up dirt poor, though, and I recognize I say all this this from a place of privilege. But beyond a minimum amount to keep a roof our heads and food on the table, and heat and lights and water.....money does not bring happiness, friends, faith, or security.

Back to this parent though.

She wants to send her older daughter to a particular parochial high school next fall. It's expensive - expensive enough that there's talk of re-financing the mortgage on the house to pay for it. And there was a placement test last month, with scholarship opportunities to top scorers.

Now....the scholarship was about 1.5 months of tuition, which is not a lot as far as I'm concerned. And she had her and her daughter all worked up about how much help this scholarship would be - how much she needed this scholarship. It turns out, however, that the girl is a solid student, but definitely not top of her class, and her scour on the placement test was pretty much where she scores on her normal standardized testing....and both mom and daughter are devastated.

Mom has been calling the school, asking them what other help there is, explaining how they can't get more hours at work and how they were counting on this  scholarship money....and my thought is, if $1000 makes the difference as to whether or not you can pay for something, maybe you ought to re-evaluate your position on what constitutes affordable.

Given that mom & dad's plan for paying for the girls to go to college is that the girls are on a traveling soccer team (which costs several thousand dollars a year), and this "guarantees" that the girls will get full ride scholarships to college (nothing is  a guarantee. women's sports rarely come with full ride scholarships, and you're more likely to get a full ride with an academic scholarship anyway), it doesn't surprise me. But....if they even just put that soccer money into a savings account every year, they'd have plenty for in-state tuition, or for a year or two at a community college and then off to wherever.

I can't help but wonder where these two girls will be 10 years from now - still thinking that there's some quick fix to money issues, not knowing how to save, still talking about the soccer stars they could have been, if only mom and dad had paid for this or that.

And I find myself wondering what kind of parent sets their kid up for failure the way she did on this placement test - it's one thing to tell a kid to do their best, another thing entirely to tell them that their worth is based on something that it is patently out of their reach.

Thursday, January 7, 2010

Why I hate "normal"

There are some things that people say that I never know how to respond to, and it's kind of interesting to me that they almost all involve the word "normal.".

"But he's so normal - we totally didn't expect that!"

"He's so big, just like a normal kid!"

And those were from people that read Acorn's "family" blog, the blog we started when I was pregnant to post updates so we didn't have to answer so many phone calls, and didn't have to answer questions over and over again....the blog that they all stalk for new photos of him, standing and crawling and smiling and sitting in his high chair....the blog where we regularly talk about how much progress he's made on eating (even if we do have a ways to go yet), and how much he weighs, and all those other things you talk about when it comes to kids....Acorn is just doing them on his own timeline.

What made them think that, beyond the tubes, he wasn't a "normal" kid - whatever that means. The opposite of normal is abnormal - and while Acorn is unusual, being a preemie and all, and having a trach....it's not like there aren't other kids like him out there.

And what, then, do they think of kids who have more visible disabilities than Acorn? How do they see children with CP or Down's Syndrome or any of the other things out there that are obvious to everyone on the street? Without the ventilator, people have actually not noticed that Acorn has a bright green oxygen tube trailing along behind him....

"He's just so good natured - so interactive - so normal!"  - because, you know, the big cheesy grin in almost every picture doesn't give away his attitude? And did you think just because he has a hard time breathing, that he was catatonic?



Or do they just think that all special needs kids - all kids, all over the world, no matter what their medical,educational, socio-economic, mental, chromosomal, or other status is - are the same? Or that special needs kids belong off in a corner somewhere, like furniture?

"He was so quiet on the flight! I didn't think kids could be that quiet" - I did say, "oh he's got some medical issues, and he doesn't talk"  But I hate feeling like I have to explain everything about our lives to everyone we meet.

"He vomited! There must be something wrong with him! Is he sick? Does he have a fever? He fell earlier - maybe he has a concussion!"  My response, "no, that's just Acorn, he vomits if he coughs too hard" doesn't sit well. Because, you know, "normal" kids don't just vomit.  And we're down to only 2-3 episodes a week, rather than "vomits after every feeding"...if we rushed him to the doctor every time he vomited, we'd never leave the doctor. But apparently as parents, our knowledge of our child counts for less than the opinion of random passers-by, who aren't medical professionals.

Even the EMT student who was along for the ride the last time we called 911 thought we must be doctors...

And Gods forbid what they would have thought back in the days when Acorn turned blue and stopped breathing every couple of days? "Normal" kids that turn blue go to the hospital. It was so "normal" for us that we didn't even call the doctor most of the time.

I hate the word normal, because it causes people to believe that they know what to expect from Acorn - that because one thing about him isn't quite normal, nothing else about him is either. And I think, overall, the world would be a more loving and peaceful place if we'd stop thinking of each other that way.