30 September 2008
No News Is Good News
Tune in again in a couple of days as Avery & I are off on a great adventure early tomorrow morning. . . .
23 September 2008
Watch Out Dorothy Hammel
Now, for the live action -- the first few minutes
After about 1.5 hours
Changing A Button
Not very "theatrical" -- next time we'll stage it a little better -- but in case you're interested, here's how to change a g-tube (in this case a Mic-Key Button)
Too Quiet!
So far the tonsillectomy has been completely worth it -- even though it took a scary turn the day after the surgery. I just hope the good sleeping & breathing lasts. . . .
20 September 2008
Back Together Again
What a week! Jordan & the hopsital, Devon & his citizenship, Devon & 3 days in SoCal, and the biggie: The return of Mojave & Sierra!!! As they say, I guess, If you love something, set it free. If it comes back to you, it's yours, if not, it was never meant to be.
Mojave took his leave on 23 August while Avery & I were at the Pend Oreille County Fair, and was out & about the neighborhood for 27 days. Sierra took off 15 days later, and was gone for a total of 11 days. Then, on Wednesday night, Sierra waltzed back in the house, stinky (pew!) and skinny, but acting like she'd been gone for ~10 minutes. Avery & I were down at the blackberry patch, but nurse Robin quickly shut the doors & gave us the great news a few minutes later when we got back to the house. Did I mention how bad she smelled!? I don't know how to explain it, but not even the cat (flea & tick) shampoo completely got rid of the smell.
So, she got a bath after the girls were asleep, and spent the night in the bathroom drying out. She's down to 6.2 pounds (from a high of 10.5 pounds, but more recently ~8.5 pounds), so I'm trying to keep her eating, and actually bought kitten food today (higher calories). Most cat foods are focused on making cats lose weight (there's even a fat cat epidemic in this country)!
On Thursday morning, after she was dry, I locked her downstairs, then opened the door to the back deck. Within 1 minute Mojave walked in, like he'd been gone for ~10 minutes, too! He had the same stink, and got the same bath. He was down to 8.2 pounds (from 11.8 pounds), so he's not quite as gaunt as his sister, but skinny nonetheless. He seems to have quite a few cuts and scratches (Sierra didn't), but none of them were serious, which was a relief. By evening he was all snuggled up on the bed with me, just like he hadn't missed a beat. Oh what I'd give for a talking cat -- I'm dying to know what little adventure they were on for 27 & 11 days. One neighbor thought he saw Mojave down in the blackberry patch a few times, which could easily explain the scratches.
We're just so glad & relieved to have them back. We're going to have to keep the doors closed for a few weeks, while everyone recovers, both physically & mentally. I guess we were meant to be.
16 September 2008
A Few Random Pics
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Citizen Devon
Since Jordan was still in the hospital, and because Devon spent the day at a training session in his Environ Seattle office, he went up for the "ceremony" alone. He said he was the only one there without guests (there were 93 sworn in), and when he got home, he was the only one that could drink his congratulatory champagne (a gift from nurse Robin, who was working so she couldn't drink, and of course I couldn't due to baby "snigglefritz"). He's off to Irvine for the rest of the week early tomorrow morning, so I guess we'll have to save the real celebration for the weekend.
Super Tonsillectomy Star
As for Saturday's scare that landed her in the PICU for the weekend, it was decided that the somnolence was from a bad reaction to the codeine in the Tylenol, and the previous doses of anesthesia (during the surgery) and morphine (the night before) probably didn't help. So from this point forward, we'll have to be very careful with codeine, using it only when very necessary (or not at all), and monitoring her very closely when she does have anything that can act as a respiratory suppressant. Luckily, she's just about passed 5 days since the tonsillectomy, and her pain is easily controlled with regular Tylenol, so we haven't needed the codeine.
Now we're just waiting for the stinky tonsillectomy breath to pass. . . .
15 September 2008
Lookin' Good!
As much as I want out of here, I am a little haunted by what could have happened on Saturday morning. What if I had been driving & not noticed she wasn't breathing? Or what if we were at home and the rapid response team wasn't there to rush in? As much as I want out of here, I also want to make sure we're really ready & safe to go. This whole episode has reminded me how many surprises Jordan can still throw our way. I'm just so thankful we were still in such able hands when things went wrong yesterday.
My Gorgeous Girls
14 September 2008
Holding Steady
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No one is sure why she's so sleepy -- it's not from pain meds as she is only getting those every 12 hours or so (because she's asleep she's not indicating pain, so they're not medicating her). And when she does wake up it only lasts for a few minutes. Now, from a pain standpoint, I think this is great, because it doesn't hurt if you're sleeping. But the question of why she's sleeping so much is a bit worrisome. Is it because she hasn't cleared the anesthesia from Friday from her system (which would be expected for a non-neurologically impaired person)? Or is it a left over from the acidosis yesterday & her brain is taking longer to clear the sleepiness of the high CO2 levels? Or is it just because it hurts in her throat to be awake and therefore she's "choosing" to sleep through the discomfort? We're not really sure, but whatever it is, we're going to hang out here and see if she snaps out of it within the next couple of days.
BD At The Hospital
For those of us that are orally eating, our food is "blenderized" by the time it hits our tummies, so what's the big deal? None of us are expected to survive on a diet of Ensure for every meal for the rest of our lives, and if we did, I wonder how strong & healthy we'd feel day in and day out (not very, I'm convinced). But there certainly is a lot of money to be made by large pharmaceutical companies that "teach" the medical world that "g-tube = formula" (at least $6 per can, which adds up quickly at a few cans a day). Many people find huge resistance for blended real food from dieticians and the medical world, but we are lucky to have great support for Jordan's BD here in "the granola northwest" -- as a fellow BD mom loves to refer to our little neck of the woods.
These past couple of days have proved that. The nurses here at the "Hotel Emanuel" have been fascinated with Jordan's blend each day. They look at the container & try to guess what's in it by the color. I've been able to make a couple of batches and bring them from home, and each one is unique (and a slightly different color). Yesterday's was fairly green -- but no one guessed broccoli! Actually, it was: pork, chicken, broccoli, peas, grapes, pear, yogurt, barley & oatmeal, flaxseeds, a pinch of salt, some blackstrap molasses, canola/olive/codliver/flaxseed oil, and cranberry juice. The day before had chicken, carrots, and banana, and was distinctly orange.
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*After I developed it I was able to get a couple of dieticians to analyze it & help me make sure it was, in fact, balanced for Jordan's specific needs -- but I couldn't find one to do all the initial legwork for me up front. Again, the only difference between doing a menu for Jordan and doing one for an orally eating person is that Jordan's hits the Vitamix before it goes into her tummy. Dieticians are supposed to be able to make menus for people -- that's their job. Their resistance is peculiar.
13 September 2008
Unlimited Chocolate Milk, While Supplies Last
The worst part is that they don't even have lumpy, old, saggy cots for the parents to sleep in -- just a reclining chair that doesn't recline all the way.
Well, actually, the worst part is having a kid that needs to be in the PICU for any reason, but thank goodness the PICU exists when you need it -- and Jordan needed it today!
All in all, despite the freaky scare this morning, things have been pretty mellow and improving all day. As of 10:00pm her pH was 7.33 (normal is 7.35-7.45), and her CO2 was 63. Her pediatrician, who happened to be the hospitalist today (total fluke), said that she would expect Jordan's CO2 to be in the 50s or 60s normally, even though a non-neurologically impaired person would be 35-45.
So, she's pretty much back to normal. However, they're going to leave her on the BiPAP machine for the night, start her feeds back slowly, and do a chest xray at 5:00am to check for aspiration pneumonia, as she did have a mouthful of food pooled up in the back of her throat when her little crisis transpired this morning. Who knows where that food went -- lungs are definitely a possibility.
Unfortunately, Avery had a hard day, too. She was prepared for me to be gone one day and one night, but when things changed she wasn't too excited about mommy not coming home or spending the night at home tonight. Luckily we were able to spend the afternoon and evening together, I even took her home and tucked her into bed -- but of course she didn't fall asleep & was upset when I came back down to the hospital. So, we made a deal -- Devon & I are switching, so Avery & I can get up and have breakfast together. She's very caring with her sister Jordan, but at the end of the day, she's 4 and still very much the center of her universe.
Avery & I got to play for quite awhile at the various play areas at the hospital this afternoon. Then we had dinner & ice cream together -- mommy & daughter only!
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I just hope there is some chocolate milk left after Devon spends the night here tonight. . . .
Thrown For A Loop
Jordan had a good night and all was looking well. The ENT was in at 8:30, happy with her progress, and in the hall writing orders to discharge her. Then things went downhill -- fast. The nurse removed the tiny amount of oxygen she was getting in her nasal canula, and bam! she tanked. We ended up with a rapid response (~15 people in the room), and within 15 minutes she was in the PICU & they were getting ready to intubate her! Luckily they were able to pull her back by "bagging" her and they didn't have to stick a tube down her already painful, scabby throat (or even hook her up to CPAP for that matter). The forced oxygen from bagging her for ~30 minues, and a little Narcan perked her up and brought her back from the brink.
The problem was that she was acidotic (her pH wa 7.1 instead of 7.4). Her carbon dioxide (CO2) blood level was at a 100 (very high, should be 35-45) because she had been breathing so shallowly for so long. She was building up CO2 by not expelling it, and not replacing it with O2 because she wasn't sucking it in like she should have been. This can be a brutal cycle, because the more CO2 that builds up, the more "sleepy" you become, and the more shallow you breath. So intervention is necessary. I'm just happy we caught it while we were still at the hospital, instead of in the car or at home -- even if it is ruining our weekend with grandpa Earl & grandma Linda!
So, needless to stay, we won't be going home today. We might be going back to the regular floor (out of the PICU), but it'll be at least one more night in the hospital to make sure she's breathing strongly enough on her own and on room air before she heads home. Otherwise still she's hydrated & her mouth is moist & the tonsillectomy site seems fine. It's just this other tricky breathing stuff we have to make sure is okay!
12 September 2008
Moisture & Healing
But good news! Because of her g-tube, we are able to keep feeding her & giving her water, which is preventing her from getting dehydrated, and keeping her mouth moist with saliva & secretions. Much to my relief, moisture does not seem to be a problem!
Jordan had some serious pain killers today, so she slept most of the day. She was awake for a few hours this evening and was clearly in pain. She was very stiff the whole time she was awake, and holding her breath or breathing shallowly (and trying not to cough), so her oxygen saturations were low. She's been on and off a low dose of oxygen all day, but it's very similar to what normally happens when she's in the hospital. Hopefully she'll be able to head home in the morning & we'll have the rest of the weekend to enjoy the great weather and the visit with grandma Linda & grandpa Earl, who arrived late this evening for a quick weekend visit.
Now, if we could just do something about that horrible "tonsillectomy scab" breath!
Success!
Now we have about 24 hours to hang out here at the "Hotel Emanuel," and if all goes well we'll be home by this time tomorrow.
11 September 2008
Tonsil Time, Finally
Oh Say Can You See -- The Election Booth
After diligently checking the mail each day for months, in July he got a somewhat cryptic note from Immigration & Naturalization Services (INS) saying he needed to be in Seattle on 9 September, and to bring a stack of paperwork with him. He also was expected to take his citizenship test on that day.
And, of course, with typical "Rowe luck" (it's not just for good parking spots, ya know) 9 September was just in time to get everything in order to register to vote. He passed the test with flying colors (100%) & is set to take his oath on Tuesday 16 September. Once the oath is complete he'll have a few weeks to head down to Clark County & register to vote. Just in the nick of time!
After the 16th, Devon will have dual citizenship in Canada & the US. And wouldn't you know it, Stephen Harper just called an election in Canada (that Devon won't be able to take part in, but also is following closely). Amazingly, that national election was called and will conclude in less time than the US election has from the end of the Democratic & Republican National Conventions. In fact, the Canadian election will be on 14 October, and campaigning will only last 36 days. I personally wish that our campaigns only lasted 36 days, but that's another story entirely. . . .
04 September 2008
Pick A Friday
Jordan's tonsillectomy will take about 20 minutes. Piece of cake, the ENT says, since her adnoids are already gone (since February, I wish he'd have taken her tonsils then, but that's a different story!). She's all signed up and ready to go at the "Hotel Emanuel." Now I just need to make sure she gets her special spot in the window next to the nurses station at the hospital, although I don't intend to leave her side for the 24-30 hours she'll be there. Fingers crossed its just one little overnight. . . . I'm still a little haunted by the 18 day stint she had last August/September over a cold. But she definitely is stronger and healthier than ever before, so there's no reason to think anything will keep us there longer.
03 September 2008
The Tonsils Must Go
But, it won't stop all of her "gurgling" -- that is a function of her poor swallow. She holds mucus in the back of her throat instead of swallowing it down, and removing her tonsils is not going to change her actual swallowing ability. But, it will give her mucus more room to go down the hatch. It also will help the (unbelievably loud) snoring -- and maybe I won't have to sleep with earplugs anymore.
I'm a little hesitant about sending her under the "knife" for a surgery with such a bad reputation for copious bleeding, but the ENT assures us that with the coblation tonsillectomy procedure there is almost NO blood loss at all during the surgery (~20 minutes total). The coblation procedure effectively cauterizes the blood vessels & prevents bleeding. There is a 2% chance of bleeding 5 to 8 days after the surgery, and if that happens they will put her to sleep & cauterize them again to stop it -- immediately (just drive to the hospital & call him on the way & he will meet us there & do it). And with Jordan, her lack of swallowing will be to her benefit if she happens to be one of those that fall into the 2% bleeding category. Also to her benefit is her g-tube: no worries about keeping her fed & hydrated post-op.
I just hope it isn't as painful at 2.5 as it was at 28 (when I got mine out, it was horrible!). Devon was ~6 when he got his out & has nothing but glorious memories hospital ice cream, so I'm choosing to believe that tonsillectomies really are easier on kids than adults, and that the pluses will outweigh the minuses when all is said & done.
Laboring Away The Labor Day Weekend
First of all, we're still on the hunt for our cat, Mojave. He "escaped" the confines of our nice, cozy house last weekend while Avery & I were at the fair, and hasn't been home since. He's been out plenty of times before, but always came back after a few hours. Not this time. One neighbor at the end of the block says he's seen him a few times in his yard, then he runs into the blackberry bramble (about a quarter-acre) and there's no way to follow him. On the other side of the blackberry bramble there's a pet-lover's house, and we're pretty sure he's hanging out with those 9 cats (or at least near their food). We talked to those people too, and they are keeping an eye out for him, but Mojave is not the kind of cat you can "catch" -- it's really going to be up to him to come home to us, and his sister Sierra (they're litter mates, and almost 9 years old, so it's strange to me that he would abandon us so willy-nilly).
As part of our Mojave "chasing," Avery and I went blackberry picking on Sunday. We went down to call Mojave with some cat food, left it out for him, and picked berries for about 40 minutes while waiting for him to come out (he didn't, but we did see him run into the bushes as we walked up).
Avery with 8 of the boxes (I was already done with 6 of them by then!)