Wednesday, March 31, 2010
After the nurse's first encounter with Bridgette's violent strength trying to get away from the needle, she actually asked me if I'd like to place the I.V. today. I suggested I'd rather watch at least once. It took her two tries, and while the second one worked, B's vein looks pretty swollen. I don't know how long it will last.
The nurse also mentioned that she wouldn't be able to give her own child an I.V. After watching the process carefully, I thought, "Oh yeah. I could do that." What does this say about me?
Baby hasn't vomited since this morning, but her appetite is at nearly zero and her temperature is on the rise. We're back to rectal irrigations too. I just did one a few minutes ago after Bridgette woke up crying mid-nap.
The infusion went well enough, I guess, though babs has yet to urinate. Also, since Bridgette is older, stronger, and more adept every day, she managed to unscrew the tubing from the cannula mid-stream. That part was bad. Asking her not to play with the tubing hanging off her arm is certainly getting trickier. I try to avoid power-struggles, but in some cases, they are necessary. She and I fight each other like pros. We could sell tickets.
At this point, my hunch is that Bridgette is in fact experiencing a bacterial overgrowth of some kind. The pull-back I got from the irrigation was neon green and Bridgette is not pooping on her own. However, there is not an excessive amount of pull-back, perhaps 10-30 ml more than I pump in, and that's a good thing. I guess it means we're catching things before she's explosive? Also, the second and third syringefuls came back fairly clear. Now I hope that treatment brings relief and healing.
Not sure why her system never seems to completely amend. She's a special girl, that's for sure. Poor baby has had more experience in 21 months than many people do in a lifetime. We're hoping to avoid a hospital stay, but it may be inevitable if we don't see improvement.
I haven't slept in a few days. If this keeps up, I will slowly unwind physically and emotionally. But don't worry. I don't plan to have a breakdown until Friday.
Last week: Introduced a new probiotic, VSL#3, per Bri's gastroenterologist.
Saturday: Took her off Flagyl to see if the new probiotic would help keep C-diff at bay. (Also took her to the Tracy Aviary to see her favorite animal, birds! Very fun.)
Monday morning: Noticed slight fever, more frequent stooling, poop becoming progressively thinner, some smearing suggesting lack of bowel control. Put her back on Flagyl. No appetite. Not drinking much. (Also took her to the treehouse park in the mall. She had a good time. Kid stepped on her hand and wouldn't get off. She didn't even whimper.)
Tuesday (yesterday): Increased irritability, tiny appetite, not drinking much (but still drinking). Stool not watery and less frequent, suggesting Flagyl is working. Also less urine, suggesting a dehydration problem. Eyes begin to sink.
Tuesday evening: Vomitted somewhat randomly at 8:30 p.m. during her bedtime story. Not dark green bile (good) but rather chunky: the one raspberry she ate around noon, the one pickle slice from dinner, the one cucumber slice from dinner. All pretty indigested, which is how I know. After another bath, indicated she was thirsty. Gave her a glass of "milk" (rice milk, Pedialyte, soy formula) which she downed in full.
Wednesday morning (today): 4:00 a.m., wake up to the sound of her spluttering and choking. Run to her room and sit her up to finish vomiting. (May I note here that I am blind? I am. Without contacts, I act purely my memory and sound since I can't see a bloody thing, especially in the semi-dark.) Remove her diaper in prep for a bath and find "normal" (for her) poop and possibly some urine too. Very strange. Vomit is clear to milky.
Baby's eyes are so sunken they are all but dark holes now. Definite lack of tears.
4:15 a.m., call Home Health Care and get their middle-of-the-night answering service. Request a pediatric nurse for I.V. insertion. Find out the first on-call nurse comes on-call at 5 a.m. Sad for her/him but hopeful that this will work to our benefit. Ask they call us to schedule as soon as possible.
4:30 a.m., post-bath, Bridgette signs for milk (almost unheard of ... she knows how to sign a few words but almost never proactively asks us for anything.) I make up a rice-milk / Pedialyte mixture sans formula. She drinks half a glass and goes back to bed.
5:00 a.m., I guess I'm up for the day. Here at the computer writing a blog entry, evidently, and also researching this new turn of events. (The doctors on-line tell me not to worry, with only two episodes, dehydration is unlikely.) She never fits the mold, but from what I can tell, she may just have a tummy bug or food poisoning and the C-diff potential from Monday is not a part of this? We don't know. Gadzooks. Too many variables.
Will update later.
Tuesday, March 23, 2010
-- I dropped a jeans size. Can't say I'm sorry for that.
This is either a result of A) having not shopped for jeans in so long that in the meantime a worldwide marketing scheme rescaled all jeans sizes to make me feel skinnier; B) the sales girls wanted me to feel good, and I'll soon be making an exchange; C) the sales girls wanted to ease me into the skinny jeans fad (heaven forbid), or; D) I've lost weight. Choice "D" is in fact accurate, but I don't think it's a jeans-size amount of weight. Thus choice E) several of the above.
-- What kid throws her chicken nuggets on the ground so she can make room for more broccoli? That's rhetorical, of course.
-- Last night was a rather sleepless one. Bridgette returned to profuse watery diarrhea yesterday morning. Every 15 minutes, a reeking watery substance soaked her diaper and immediately leaked out leg cuffs, up her back, and all over her current venue. The odor was one that I now distinctly recognize as caused by C diff overgrowth. Vomit. She didn't. But it made me want to. And no, it doesn't smell like vomit. It's much worse than that.
-- Despite the almost sleepless night, this morning I was woken early by the phone. It was a telemarketer. I was mad.
-- We had just taken Bridgette off Flagyl two days before when she flared up. I restarted doses before her afternoon nap (yesterday) and she is already much improved. Today we even went shopping (for jeans), played at a park, bought lunch, and ate broccoli. I hope we can successfully take her off antibiotics at some point.
-- My mostly sleepless night cannot be fully attributed to Bridgette's health. I'm reading a really good series right now and can barely put it down. When I do, I think about it... sleeplessly.
-- I can see why my mother said prolific reading made her a bad mom. I don't believe it, but it's certainly hard to strike a balance. Any advice from you copiously reading parents?
Here are some photos of Bri this week:
She was fully uncooperative. It became apparent if I didn't stop, someone might really lose an eye. I haven't snuck in at night yet to straighten her bangs while she's out, but one of these sleepless nights would be the perfect opportunity, no?
Monday, March 15, 2010
We had a lovely shopping trip today where Bridgette picked out her own yarn for her own homemade hat. Orange. Yep, good thing she chose.
When we exited the store we heard a train. Rather, Bridgette heard a train. She has excellent ears. It's not a matter of hearing so much as distinguishing noises that, for most of us, blend into the background.
One advantage of living where we do is that our house is near train-tracks. Oh who am I kidding? In this valley we all live near train-tracks. That's what happens when there's a narrow residential strip between mountains and a lake. It's what I like to call living between a rock and a liquid place. In our city, that strip of houses is particularly narrow. So we hear lots of trains.
We also hear lots of helicopters. One of the valley's hospitals is located not far from here, on a slightly higher and wider strip of land between the mountains and lake. (Despite the proximity, I'm sorry to say they don't take our insurance.) Life-Flight crews from the hospital fly over our house at least once a day, and on days that shake a lot of lives, we may hear up to 20 flights. Actually, I hear them now, right as I type this sentence. Could be irony. Or serendipity. Or simple coincidence. It makes me sad when I hear them, but grateful we have helicopters for faster rescue.
Although Bridgette has a harder time distinguishing between un-muffled motorcycles and ridiculously overgrown trucks, she can easily distinguish the sound of helicopters from the sound of trains. Much more easily than me. For the former, she points up in the air and says, "Ooooooooooooh." For the latter, she points out our back windows and says, "Oooooooooooh." Usually it takes me a moment to catch on.
Now back to today and the orange yarn. Bridgette heard a train. Since she's never actually seen a train, I quickly stuffed the groceries in the trunk, strapped her in, and took off train chasing.
First we headed to the trainyard, thinking that we may have missed the running train, but surely we could see one close-up, just sitting there. Road closed. Stymied.
So then we drove in the opposite direction, following the tracks through the city. Fifteen minutes north and three cities later I gave up and turned around. I guess the train outpaced us. Or perhaps it just *poof* disappeared. You never know.
And what do you think happens? Only 60 seconds behind us is our train! I guess it *poof* disappeared and then *poof* reappeared. Trains are pretty magical that way.
We parked the car and stood out on the curb waving at the train. As if on cue, the conductor blew the horn and terrified Bridgette who buried her head in my shoulder. Ah well. She's likely to remember trains now.
This got me thinking though. I'm always wanting to go out and learn stuff, see stuff, do stuff. When Bri feels well, I'd like her to join me for stuffing. That's the fun part of being a mom.
So I decided to make a list of all the local wowie stuff we could do (meaning no further than 3 hours drive, though most are significantly less). Then I decided to find sites and links and post them here because that's the awesomeness of the internet. Sharing. Easy access.
Listed items range from pricey to free (in no particular order). Given our extreme weather variance some are indoor, others out, and perhaps a few are both.
I'm NOT including movie theaters, regular restaurants, shopping, bowling, small city parks, and similar common activities. No spas either. That deserves its own list. A few items are events, more than places. I will add stuff (and more stuff) to this list, probably for the rest of my life.
Hope you enjoy! If you have more ideas, please leave a comment!
The Living Planet Aquarium
Museum of Life, Gardens, Petting Zoo, Glass Blowing, Events
Utah Olympic Park
Sweet Factory Tours
The Peppermint Place: 801-756-7400
Salt Lake City, UT
Cookies & Gifts: http://www.mrsfields.com/misc/factory_tours
Indoor, Outdoor, & Film Festival
Crandall Historical Print Museum
Seven Peaks Ice Arena & Water Park
This Is The Place Heritage Park
Lagoon Amusement Park
Shows & Exhibits
Wheeler Historic Farm
Mount Timpanogos & Timp Cave
Bridal Veil Falls
Provo River Parkway
Paved Bike Trail, Canyon Parks, Marathon
Brigham Young University (General)
Science, Art, Museums, Shows, Tours, Drama, Sports
BYU Performing Arts
University of Utah Sports
Monte L. Bean Museum
Taxidermy & Live Reptile Shows
Museum of Peoples and Cultures
BYU Planetarium & Observatory
Hill Aerospace Museum
Historic Union Station
Utah Shakespeare Festival - Tony Award Winning
American West Heritage Center
Kennecott Copper Mine
Springville Museum of Art
Discovery Gateway: Children's Hands-On Museum
Utah Museum of Natural History
Paleontology, Anthropology, Geology, Mineralogy
Treehouse - Step Into a Story
Utah Museum of Fine Arts
Ellen Eccles Theatre
(Includes Utah Festival Opera)
Temple Square Concert Series
Mormon Tabernacle Choir, Orchestra, Pipe Organ, Bells
D.R. Puppets' Theatre
Trolley Square, SLC: 801-363-1441
Kingsbury Hall Performances
Pioneer Theater Company
Red Butte Garden & Concert Series
International Sheepdog Championship
(Our favorite event of the year!)
Bonneville Salt Flats
Antelope Island State Park
Utah State Parks
(All the Others)
Timpanogos Story Telling Festival
National Parks & Trails in Utah
Heber Valley Railroad
(ie: Heber Creeper & Events)
Hot Air Ballooning & Tons of Other Stuff
SCERA Center for the Arts
Outdoor & Indoor Theater, Events, Workshops
NBA - Utah JAZZ
MLS - Salt Lake REAL
ECHL - Utah GRIZZLIES
Orem Owlz: http://www.oremowlz.com/
Salt Lake Bees: http://www.slbees.com/
NBA-D - Utah FLASH
Corn Mazes - Autumn
http://heehawfarms.com/ (Home of Leroy, the really big pig)
International Peace Gardens
Snowbird Ski & Summer Resort
McCurdy Doll Museum (4,000+)
Admission: $2 Adult, $1 Child
Utah Trails Resort (Indian Village)
TiPi or Hogan Camping, Entertainment, Crafts, Horseback Riding, Petroglyph Classes
Off-Broadway, Dance Companies, Musicians, etc.
Salt Lake City: http://www.daysof47.com/
Pleasant Grove: Strawberry Days
Lindon: Lindon Days
American Fork: Steel Days
Open Tumbling Gym
Ropes Course & Canoe Rental
Sri Sri Radha Krishna Temple
Historic Temple Square, Salt Lake City
(Beware, fellow vegetarians, deer heads on the walls!)
Now as far as Bridgette goes, she's obviously feeling better or I wouldn't have taken the time to make this entry. Her bowels are actually more regular than we have ever seen them, and she's had more wet diapers in the last week than at any other time in her life. It's kind of weird. Finally! A weird that's good! A weird that's normal!
At 20 months old, Bri is officially half my height. However, she is still less than average in weight. Last week we took her to all her specialists at both medical centers to figure out why she got so sick and what we should do in the future. And none of them agree with each other. Bridgette's case is so unique, we are all guessing.
Bri also had a routine "Kids On The Move" developmental assessment, and as a result we have decided to add visits from a third therapist. She will now have 3-5 therapy sessions a week, starting... we don't know. Soon.
Friday, March 5, 2010
Granted, she hasn't peed at all since then. But we're believers.
Now would also be a good time (as if any time was a bad time -- sheesh) to share our gratitude to all of you who have sent up prayers on her behalf, written supportive notes on Facebook and blog comments here, made us surprise meals (all very tasty -- I hesitate to tell you how fast they were eaten), and expressed concern in person or over the phone.
Last night, being the action!
And talk about action!
For the first time she walked without putting weight on me.
She's just using my hands for balance.
That's a huge... ahem... step!
Thursday, March 4, 2010
I love the end of February. By February's arrival, days have already been dark for long enough; winter has had its say and should leave well enough alone. Why make us endure one whole month more of dark and winter and call it February? Besides, February is spelled weirdly. No wonder the calendar gods won't give it more than 29 days in a generous year.
But March is nice because it represents a good fight. Winter and spring tussle day to day, and there's not a year so far that spring hasn't won out. Not in my lifetime anyway.
I suppose the last two weeks of Bridgette's health represent our personal February to March transition quite well. February 21-28 were horrible with my peak depression on the 24th, peak anxiety on the 26th, and peak stress on the 28th. Darn Feb-R-uary.
Then came March, and we finally found the good fight and some spring buds. We can't quite see the horizon, and it's still a bit chilly, but spring is donning its boxing gloves.
After emergency room visits Friday (Feb 26 - PCMC - 10 hours) and Monday night (March 1 - Riverton - 4 hours), we were able to visit our pediatrician on Tuesday. By then, the cold that triggered Bri's intestinal shut-down had also given her an ear-infection and upper-respiratory infection. We'd been watching development carefully, so I think we caught those two complications pretty early.
The pediatrician also helped us get return calls from the pediatric gastroenterology team at PCMC (who told us we could come in on April 21st - haha! - we had words about that), and the infectious disease specialist in Utah County. Those appointments are now scheduled for next week, Monday and Tuesday.
Then on Wednesday we visited with Dr. Black, her surgeon at PCMC, and he agreed that it was a terrible waste of everything holy for us to go to the E.D. for rehydration. A waste of our time, a waste of emergency resources, and a waste of IHC health insurance funds (the benefit of reaching our maximum out-of-pocket the second week of January is an obvious simplification of billing on our end for the rest of the year).
Initially, he used the same line I have heard a lot over the last week as I've tried to figure out a way to administer I.V. fluids at clinic or at home, "The system just isn't set up that way."
But we worked it out between 4 different hospital administrators, and I was not only set up with pediatric home health care nurses and a load of I.V. supplies, but eventually it was decided that "this health savvy mom here" could be the one to make the call. Essentially, I don't even have to go through PCMC or my pediatrician to request action. I can literally make all the calls.
The situation is unusual for the home health care folks. As such, we have to do a few administrative tricks to keep us in the system, but hopefully it won't be too much hassle.
Somewhat ironically, as soon as we got the I.V. situation set up for home, Bridgette had a wet diaper today! She also pooped last night! Her lungs sound minutely better, and she's not grinding her teeth as much to resolve ear pain.
Today she also ate food! Granted it wasn't much but it was certainly better than nothing (nothing being the sum total of the last 9 days).
Today she ate 1/3 of one strawberry, 10 black beans, 12 kernels of corn, and 5 bites of oatmeal. She also licked three blueberries. Her fluid intake has not been stellar, but it's a slight increase over days past.
In the meantime, Bridgette is taking Amoxicillin for her ear/lung infections, a second round of Flagyl to stave off C-diff overgrowth due to the Amoxicillin, and Diflucan to stave off yeast colonization due to both the Flagyl and Amoxicillin. When you add her probiotics, daily vitamin with flouride, and Tylenol for pain and fever, we practically have our own apothecary. We line up all the little medicine droppers and start plugging away! It's not Bridgette's favorite, but she is obviously already feeling better.
As to the reason baby's intestines didn't work for over a week?
We still don't know. Dr. Black's best guess was that it wasn't mucus or yeast or bacteria. He guessed that the viral infection that first manifested itself as a cold simply moved into her intestines as well and wreaked havoc there. Have you ever noticed how havoc must be wreaked? I suppose there is no other way.
If that is true, I suppose I will be more grateful in the future than I am even now for the home health care set-up. If baby's instestines stop operating with every cold, every flu, every viral or bacterial anything... it could still be a long winter. But man, when it ends, what a spring.
Emergency Room beds are not child-safe, so this time I decided to climb in with her. Although sitting like this for 4 hours wasn't pleasant for either of us, it's better than standing!
On our way out the door, we checked the mail and found a care package from our good friends in Nebraska. The timing couldn't have been better. There were anti-bacterial wipes (perfect since Bridgette likes to suck on the hand-railings), tissues, a handmade bib of awesomeness, and the bright orange fairy doll pictured below. Bridgette really liked taking her shoes off and throwing them across the room.
Fairy receiving kisses from Bridgette. Or was it the other way around?
This is a new favorite photo for several reasons: 1) it reminds me how cute Bridgette is, and 2) how inventive we can get, and 3) how well this works. Bridgette gets nervous any time anyone comes in the hospital room. She usually yells and flips herself over, trying to get out of reach. At Riverton we learned how to solve the problem. When someone comes in the room, she simply *disappears*!!!
Uh-huh. Around 10 p.m. Bridgette and I are both "sleeping."
Monday, March 1, 2010
Trying PCMC's "sister" hospital in Riverton that claims less traffic (probably true) and faster in-&-out times (yet to be seen). Baby's stool labs all came back negative (a good thing), but she's still very distended and not passing any poop or urine or gas on her own (a very bad thing).
We'd really like answers! Sadly, I was on the phone all day today trying to set up follow-up appointments with doctors who are too busy to call us back. At least they said as much on their voicemail messages.
So in the meantime, we'll take some more I.V. fluids to prevent severe dehydration.
She's somewhat active and happy today, though I can tell her tummy is sensitive. She's drinking minimally and not vomiting. That's good. But she's also not eating. That's bad. She's definitely losing weight again. It's fortunate she had all those delectable rolls of fat on her arms and legs because I think they are now staving off starvation. Her skin is hanging off wrinkly-like where her fat deposits are rapidly disappearing. Think blue whale migration.
Update(s) later! Wish us a nice FHE (Family Hospital Evening)!