Tuesday, December 21, 2010

At least some changes can be slow

Yesterday I toured a local daycare center.

It's something I never intended to do - before Acorn's birth, we'd talked about a nanny, or maybe having a family member watch him.

After his birth, when we thought he was coming home at 4 pounds with an oxygen cannula, we chose an insanely expensive private Montessori school that took infants through kindergarteners. They took cloth diapers, they didn't mind oxygen, they didn't mind the 3 month delay in skills. They santized obsessively, and had a culture where kids didn't come to school when they were sick. Our only complaint was the cost, but what could we do? It was certainly something we could afford to pay for, although it was going to require some budget adjustments.

And then came the trach. And nursing. And dozens of appointments.

And here we are - we can see an end to the trach, and with that comes and end to nursing.

Acorn is not the kind of kid you can leave with someone he doesn't know. He's had far too many bad experiences in his sort life to be comfortable with that. His primary day nurse has been with us since he came home, 19 months ago. To take away caregivers he's completely comfortable with, and thrust him into a completely unknown environment full of other children (which he has very little experience with) would be a disaster.

Actually, that lack of social experience is a big part of why we're doing this instead of a nanny. We have a Montessori elementary school in mind, which has a preschool program...but right now there's no way he'd be ready to do that next year without some experience between now and then.

So....yesterday I went and toured the best daycare we'd found in over two dozen calls. It's not Montessori based, but it's attachment-parenting friendly, cloth diaper friendly, low kid to teacher ratios, and close to home. It's a place where everyone works together, and teachers and children alike are expected to treat each other with respect no matter how different they are. It's a place that already signs with their toddlers, so signing isn't a problem; it's a place that routinely has children who come in speaking only a foreign language, no English - so the speech delay doesn't phase them. It's a place that has had challenging behaviors before (2 different kids who were eventually diagnosed as Autistic) so Acorn's quirks aren't going to seem like a big deal. It's a place that's very open to parents sticking around, and who wasn't phased by the statement that he comes with a nurse. They happily challenge kids academically, don't mind 3 year olds who aren't potty trained (though I hope we'll get there in the next 6 months), and treat each child as an individual.

It's a place that will work to figure out Acorn, complications and all, and give him some experience with what normal kids do. And they have no problems with him going 2 days a week from January until decannulation, and then switching to full time without a nurse, because by then he'll be comfortable there, know the routine and the kids and the teachers, and removing the nurse shouldn't be an issue.

Or at least, that's the plan...not that he's been all that reliable about doing anything according to plan, but it's the best we've got right now.

Sunday, December 19, 2010


All changes, even the most longed for, have their melancholy; 
for what we leave behind us is a part of ourselves; 
we must die to one life before we can enter another.  
~Anatole France

It's looking like 2011 will be a year of change around here. There's a lot going on behind the scenes - big big changes are afoot. Big changes, and even some little ones, can be scary.

The most obvious change heading our way right now is that Acorn will be getting his trach out. He's capped all day except for his nap (and he's catching part of his nap with his cap on too). He has to go all day, including his nap, with a cap, before they'll schedule decanulation, but they won't schedule it until the spring anyway (to avoid pulling it during cold and flu season and then having him end up back in the PICU with a severe illness).  They told us to expect it to take a long while to work up to wearing it all day - a couple minutes at a time, even - but within a week he was wearing it all day without any issues.

When we started capping him, we also downsized his trach, and that has meant he's not sleeping on oxygen either (which shouldn't happen, logically, but it seems that kids with BPD/CLD are super picky about pressures, and the difference matters to Acorn). It's so amazingly quiet in here without the oxygen concentrator running - not that we hadn't realized that during the day, but during naps, and at night, it's almost eerie -there's not a sound through the baby monitor, and that's so amazingly different from a year ago, when we listened to him breathe with the help of the ventilator.

But decannulation also comes with some down sides. We lose nursing, and we need to find Acorn a daycare situation. We lose the ability to treat hard-core illnesses with the equipment and supplies we have here at home. We lose the security of knowing that if anything does happen, we already have a guaranteed airway - our recussitation bag doesn't have a mask, just a trach adapter. 

Not that we've bagged him in the last 18 months, but I've got a friend whose child recently had a febrile seizure and stopped breathing, and the panic in her voice even a week later was horrifying; here we have dealt with a child not breathing and turning blue enough times that it isn't such a shocking thing anymore, especially since we have all the equipment that an ambulance would have.

Anyway. There are other changes coming too, and I know I'll be talking about them in their own time, but if one big change is scary, think of how several all at once must feel. I keep reminding myself that it really is a light at the end of the tunnel, not just a freight train.

Friday, December 17, 2010

Trach Mom's 12 Days of Christmas

My friends, @kysilka and @jterzieff, decided we should have a blog theme day, with the theme being "My Version of the 12 Days of Christmas."  On one hand, I could point out that we celebrate Yule, which falls on the 21st this year, but I figured that wouldn't be in the spirit of the game.

You can go see all the entries in the comments over on Julliet's Blog

So....without further ado, I present to you the Trach Mom's 12 Days of Christmas:

On the 12th day of Christmas my trach kid gave to me:

12 saline bullets
11 suction catheters
10 rubber gloves
9 lost trach noses
8 tanks of oxygen

7 alarms alarming
6 therapy appointments
5 pulse ox probes
4 crazy doctors
3 night time nurses
2 trach ties
and a broken suction pump (yes really, one of ours is broken again)

Saturday, December 4, 2010

Saturday morning

Some days, morning comes far too early. Our Saturday nurse is out on medical leave, which means on Saturdays, one of us has to be up by 7 when the night nurse leaves for report...and then frequently, I head back to bed, and turn the baby monitor on.

This morning is no exception, except I couldn't sleep.

I'm over-tired and stressed and still feeling rather depressed. My spouse and I both appear to have caught some cold from the hospital, and when he's sick, he tosses and turns and snores worse than usual. My tummy is unhappy about something, and so here I am with dry cheerios and a cup of tea, watching Acorn sleep on the video monitor.

Acorn is not even 48 hours post surgery, which has brought its own issues.

At some point, I'm going to have to write more about this whole nursing thing - the good, the bad, and the ugly, because I don't think most people really fathom how this works out.

But today, I'm just talking about today. So... nurse reports that Acorn was very restless. She did not give Tylenol w/ Codeine (good, because we asked her not to) but she feels he must be restless because of pain, and thinks we should reconsider.

Let's see. He's a day and a half post surgery, he has a tube sutured in place in his penis and a piece of tegaderm trying to release itself from his penis as well, and he is usually sensitive to wet diapers, but because of the tube, he drips urine all the time instead of peeing and then having dry pants for a while when you change him. He's on medication for bladder spasms (which, if you've never had one, are amazingly uncomfortable), but the same medications dry up his secretions to the point that the nurse had commented on him being awake from 4-6 and desatting constantly, and her finally suctioning a huge mucous plug out.

No....none of that could possibly be making him restless. Not at all.

Not to mention the fact that codeine makes him pace the floor...which means when he sleeps with codeine on board, he tosses and turns all night.  We learned tihs last surgery, and this same nurse went ahead and gave the codeine after we'd suggested not doing so, having noticed his twitchiness, and then she complained that he was still restless after she gave it.


Anyway. He's laid here for the more than an hour she's been gone, and not moved once. Some restless night, huh?

Thursday, December 2, 2010

deja vu

Today Acorn is having (will have had, by the time this posts) surgery that will hopefully finish contine repairing his hypospadius (though there's a risk that they won't finish in the time allotted, and a risk that it just won't heal quite right, and in either case another surgery will be required). didn't finish. sigh.)

It's a day of deja vu all over again.

Not just because we just did the first batch of this back in April.

No....this is deeper than that. This morning we drove the same drive to the hospital that we made at least once a day, and sometimes twice a day, when Acorn was in the NICU.

We parked in the same parking spots, made the same walk across the bridge (albeit with the stroller this time).

We came to the same surgical waiting room where we sat to get his trach. The staff here remembers Acorn - he's too cute not to remember, but kids with trachs aren't that common here either, which means they remember the trach, they remember we were here forever (though no other details) and they comment on how big he is, how much he's grown, how his smile still lights up the room.

Last time we were here (or was it the time before?) there was a couple at the other end of the waiting room with tiny twins, only a couple months old, both on oxygen, and a pulse ox. One was getting eye surgery, and while waiting, the other started screaming to be fed. Mom was trying hard to make formula while digging through all their equipment, and was terribly embarrassed about the noise. I wanted to tell her not to worry; babies cry, and she should be greatful that she could hear hers.

I will always remember the smell of hospitals. The smell of disposable diapers (one of the little reasons we stick with cloth) mixed with sweat and blood and fear.

And though it pains me to put my kid through this again, to put me through this, it needs to be done.