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We barely avoided being trapped in the sucking void that is PCMC beuracracy. We are tired and more than slightly freaked out. All scheduals are jacked, all bets are off...

...but we are HOME.

Halle-freakin'- lujah

Notice the hand... puff-baby.

Once again, history is spared the worst of the visuals by the combination of my inability and unwillingness to photograph a sobbing baby that I am rocking endlessly. Plus, I seem to lack the lighting and/or mad photography skilz to record the peeling and sloughing of Pearl's skin. I shall descibe it for you...

"ew."

Her earlobes are scaley and peeling. The skin around her right eye appears deflated and both eyes are surrounded by peeling tissue. I have her greased up like a little piggy, but nothing could stop this peel... she was THAT rashy and THAT swollen.

A brief overview of Edema... her hands were so swollen, she could not grip a binkey or a ball. The ankle ID tag that, just days earlier would slide off if she pointed her toes: burst. The picture of her in the wagon... that's as far as she could open her eyes. She could no longer pee without a catheter. We had to go up a size of doobah to fit around her puffy legs. Swollen. I hated to move her because her legs and feet felt as if the skin would split if I was too rough.

She has run brief, low fevers the past two nights, followed by a new round of itchies... but it's manageable with the Zyrtec and Benedryl. She is eating and drinking on her own. She is voiding on her own. She is breathing on her own.

Barring a freak accident or a new, horrific allergy... we go home tomorrow.

Home.

Update

I cannot give any details.

I just can't.

My mind is overloaded with the yakyakyak of medi-speak. Dude, I call eating or drinking food P.O.ing, and the state of not-having-a-fever: afebrile. We got's to get outta here.

She HAS been afebrile for almost 24 hours now (please don't make a liar out of me kid!) and the edema (swelling) of yesterday is much better. She can use her fingers again.

Today I was hit with the overwhelming impression of comfort. The hallways here are thick with angels, and Heavenly Father is well aware of each little child. He knows my Pearl better than I know her. He loves her even more than I do.

....ever-thin' gon' be alright.

yo HO!

Check it Dread... we are related!

My pirate name is:

Black Anne Rackham

Like anyone confronted with the harshness of robbery on the high seas, you can be pessimistic at times. You have the good fortune of having a good name, since Rackham (pronounced RACKem, not rack-ham) is one of the coolest sounding surnames for a pirate. Arr!

Get your own pirate name from piratequiz.com.
part of the fidius.org network

She's a Gem

My poor, poor baby. She is a rare Red Speckled Pearl. This pic is from yesterday, and she looks worse today... angry red hives that are so densly packed that she is encased in hot, itchy red. Her face is a mask of hives... there is not a square inch on her body that is unaffected.

Everyone has paraded through here... Pediatricians, Surgeons, Residents, every sort of Nurse you can name, Infectious Disease docs, Dermatologists... they all agree it is a drug reaction. But it is entirely outside their experience in the magnitude of the rash. Because the allergy could easily turn and close her airways.... we do not go home till she is done. But she is also profoundly at danger of catching something... anything, and this is a Hospital. Yay.

She has also chosen to grace us with at least one new eyetooth.

On the happier side of life, I cannot forget that she HAS dodged so many bullets, and as sucktastic as this is... it could be worse. If it follows the course that LaLa's polkadots did, she could be done in a few days. Of course, as soon as LaLa started exibiting symptoms, I discontinued the offending meds. In Pearl's case, they upped her intake for two extra days. We may be a while.

Interesting tidbit: the doc who did the surgery in December (the Two-Penny Incident) came in last night to talk to us. Turns out he was there as an assist in getting the sequin out. I wasn't aware of that. I asked him if he thought that it was possible that the sequin had been there all along and he kinda looked at me like I was crazy. He said that while no one could be sure about it, he believed that it HAD been there. He said it like he had no question in his mind that it was. This is a relief and a vindication to Dadguy and I... that the surgeon who had been there both times thinks so, and would actually SAY so. I never thought that I would get that kind of concession, if only for ego or insurance reasons.

This has been a frightening path, but I really do think that the bulk of it is behind us. Unfortunately it's my beleagered Pearl who has to gut out the last of it as she has the first.

And my sweet Chaos. I haven't talked about them much here. I can hardly bear to. They are safe and happy and loved... they are doing better than could be hoped for. My mom came from New Mexico to stay with them for ten days, they have been at Gramma's house and with my big Sis and SIL. I treasure the funny tidbits that I hear of what they have been saying and doing. Many blogworthy anecdotes that will live in my heart, but will never get any play here, mostly because I am hoarding them in my heart. But also because I have become the Queen of Not-Thinking-About-It.

I don't think much about "what if" or "why me" or "how much more?" I just think about what is here, what hurts, and what I can do about it. And I think about home. I think about going home and being the Chaos Family again. Dinner time. My homemade Fettucini Alfredo that everyone loves. I think about all the girls wearing swimsuits and running through the sprinklers. Otter pops. Camping trips. Reading books at bedtime.

I know I will find occasion to bitch about cleaning up two inches of slop from under the highchair after dinner, but I suspect that it will lack the rancor that it has had in the past. I suspect that I will be kvetching with a smile on my face, shaking my head in wonder

More Hoping

Wish the title was "More HOPPING," but I'll take what I can get right now. She passed all her tests, but most important; she had no excess of white blood cells even at the hight of her fever. This means there really is no infection hiding somewhere in her body. This also means that it is probably a simple overload of strong antibiotics and meds, and she has developed an allergy to penicillin. We hope.

They have taken her off of everything except for one wide spectrum anibiotic that they think she couldn't possibly be allergic to. Now we wait and see. This could actually take a while. Remember LaLa, the Polka Dot Princess? I think it took around three days from the time we cut the Augmentin before she was all better. Once again... I'd just link to the posts in my archive, but grrrrr! You can check my archives for posts from Feb 13th, 2006 through feb 16th. Likely the same timeline for this.

On a happy note, she is back on a clear liquid diet with one noteable exception that I twisted out of them.... ice cream.

Who loves ya, baby?!

Not So Great News

The girlie, she has been running fevers. The worst was last night and today, plus she started with a funky rash thing all over her body. Her heartrate has been way up there too... tachycardia. We have spent all day, running back and forth with the Esophagram, Xray, CT scan plus no more eating or drinking. Plus her IV lines have repeatedly failed, so now they have one in her foot. She is not allowed to walk anymore. Not that she wants to, she feels pretty crappy.

I've had my moments feeling pretty crappy today too.

All the tests look normal, but they aren't taking any chances. Next come some blood tests and tests to see if she has a bladder infection. I'm just hoping its some dumb virus that just freakin' goes away!

hope.

Sadly, they had let here start with soft foods yesterday, and they were set to pull the drains in her neck last night. The nurses had fully expected to send us home today... tomorrow at the latest. Now the best we can hope is for the fever to stay away for 24 hours and then start with the liquids again.

hopehopehope.

Sunday Pic

Rockin' the PCMH old-skool, baybay!

She passed her Esophagram with flying colors! So much so that the doctors ordered a diet of "Clears PO" starting Saturday morning. This means clear fluids BY MOUTH! This is a HUGE deal... this is also a full month and a half sooner than they had every intimated this could happen.

Before you say... clear fluids, whoopty-doo! Check out this list of possibilities:

Water
Enlive- an apple flavored nutritional energy drink
Carnation Instant Breakfast Juice Drink- in orange and berry flavors
Apple Juice
Grape Juice
Cranberry Juice
Gatorade
Sprite
Rootbeer
Chicken, Beef and Vegetable Broth
Jello
Popcicles
Slushes

Dude, they have a Slushie machine on our floor!

Here's the deal... her surgeon, Dr. Brilliant-Surgeon the Queen of the Worst Case Scenario shared with me a vision of the best case scenario. You interested? Yeah, I was too.

If everything goes perfect... we could leave the hopspital with the G-tube in place as a "precautionary measure." There is an outside possibility that we never have to use it at home. I am now struggling to not get my hopes up. That "sproinging" sound you hear? That is me failing horribly.

But the pressure is ON. Last night she busted her PICC line. It was a freak accident, but if she cannot get up to speed in three days? We have to put her back under and give her a new line, and back to square one. Currently she has a plain old IV line that is keeping her hydated. So this weekend's family "Fast and Prayer" session is still on. If you would like to join in... you ARE considered part of the Chaos Family via Trial-By-TMI.

Some Good News

Just as clarification: The two weeks of healing is just the minimum amount of time to allow her esophagus to heal before they will chance her throwing up real and for-actual fluid. Once we get to that point, we start feeding her through her G-tube. If she tolerates THAT? Then we head home for the hard part. Life with the G-tube, and somehow keeping all food and drink out of this poor kids mouth. For about two months.

The good news? She had already demonstrated that she can swallow.... her own spit goes down nicely! She has already demonstrated that her vocal chords were not compromised, she can talk, laugh and cry. Just not very loudly yet. So long as I can keep her from using her throat.... for any kind of eating and drinking for the prescibed time, we should be back to normal. Right now I am tenuously hoping for our annual Pioneer Day trip to the lake. For those of you who don't live in Utah.... that's around July 24th. Hoping for it, but prepping myself for a summer of G-tube frolic.

More good news? My concerns about her funny swallowing sound and the appearance of swelling above her neck incision actually delighted the surgeon when she saw them later in the day. The funny sound is just more of the healing process. The swelling was not swelling at all, but a decrease of swelling causing the flesh above the incision to kind of sag down and give the appearance of puffyness. The oxygen dip? Is something that happens to lots of folks as they naturally fall asleep. As a matter of fact, she is now DONE with that particular annoying monitor, and only has to get checked with it once a shift rather than try and sleep with it on. I say annoying because every time she rolled over it would shift, and the crapping alarm would go off and wake her up. And then I would wake up and have to rock her back to sleep. It is possible that a cranky mama snarling at the night nurses had a little something to do with the end of THAT experiment in sleep deprivation.

More good news? She can swim and bathe with a G-tube after it heals, and we are almost half way there. More good news? There are many people who care very much about this little girl and the Chaos family. The goodwill and love is pouring in. I SWEAR that I can feel the good joo-joo being aimed in our direction! I have been getting e-mails and calls and visits from family and friends. Jo from Utah (links are down... you can find her though my comments) came to visit me yesterday. She brought a gift bag for Pearl and I. I now plan to have pictures soon of the girlie with TWO defiant ponytails, complete with a bit of ribbon froo-froo on each, thanks to Jo's kindness.

Another lurker around here is a co-worker of Dadguys (hiya J!). She sent over a large toy drum just packed with the cutest bug themed instruments and sound makers. It sounds like a par-tay around here. Neighbor down the street sent over some "light reading" and treats, along with a Braveheart Lion toy. Elizasmom sent a gift certificate for Amazon.com, and I think we WILL take her advice and get us some Pigeon Books. The poor women in my Ward are a little distressed that we have not yet asked for help, but really? We have been so well taken care of by family, it's hard to find a spot on the Wagon of Chaos for more people to help push! I bet we will be asking for help later though.

Tomorrow is gonna be a very big day. She gets her first Esophagram done. It's a swallowing, x-raying type test-a-ma-whoosit that will give us an idea of how the healing is going. It is perhaps in the realm of possibility that we could go home some time next week. Maybe. Please?

Well I gotta go. Pearl is napping and I'd like to use this time to take a shower before my Sis comes to stay with the girlie so Dadguy and I can go see Spiderman 3. You heard me... I'm goin' on a date tonight!

Untitled

Bear with me... a little post-therapy.

I think I'm a little raw today. Don't know if it's because she seems to be a little puffy above her neck incision, a funny click as she swallows while binking or maybe the two times that her oxygen dipped low enough to get her Pulse-Ox monitor beeping as she fell asleep for her nap just now. Maybe it was that I experienced changing her Gastrostomy tube bandaging this afternoon for the first time myself.

I can do this, the G-tube thingy. But I won't kid you, nightmarish is the term that I have for it in my heart. I get to party old-school-nightmare-style with the Pearl girl twice a day for the next two weeks till the G-tube site heals. Then about three times a week, or as necessary. Hopefully I will get to a place where it does not sear holes in my heart every time we do it.

Don't get me wrong. I'm going to be very good at it. I am already careful, firm and thorough. I pretend that I am a nurse and that she is my patient, not my screaming babygirl.

And I just keep thinking that it takes a very special breed of human to work in a place like this. A special strength to do what must be done.

I feel myself already starting to bend and change with this experience. I am open to what I must become to survive this. We're gonna make it, but it hurts.

I went into the giftshop just now to see if I could find some little girl rubberbands or hair-doodads. They didn't, but as I looked at all the carefully displayed items that they had, I noticed that it was all so attractive. Enticing and useful things like funny, brightly colored kids socks that come by packs of three socks; all three differently patterned and mismatched. Cute lipglosses. Sweet little toys for babies, and lovely hand creams for moms next to children's books and funky wristwatches. I thought about getting some lipglosses to give to Birdie and LaLa the next time they came to visit. I started crying and couldn't stop. I paid my dollar for the small pair of nail clippers I had in my hand and fled that little oasis of cheer. No one commented on the tears, most people have a way of looking to the side to give those who are crying a little bit of privacy. I am grateful for that.

I am starting to understand an interesting array of things that I never before cared to even think about. And as much as it galls me to expose myself in this way, it has to be done or I will fold in on myself till I can't go anymore.

I want to thank you for your thoughts and prayers. I read it in your comments, and know it from the knowledge I have of you and your lives from your blogs and past conversations. You buoy me up. Thank You.

Sunday Pics: New Stuff

Here are a few of the new and improved Pearl features and upgrades:

*now comes in sans sequin and sans apricot-sized-abscess model!
*new three to four inch incision at base of neck, complete with stitches and surgical tape.
*two drain tubes sprouting from incision site.
*handy snap up purse to hold drain bulbs at ends of tubes with saucy over-the-shoulder straps.
*ankle bracelet name tag.
*Long term IV insertion in left arm, plus countless meds, fluids and nutrition being dumped in daily... comes complete with 35 lb mobile IV stand.
*three inch incision on tummy, plus an all-new gastrostomy draining/feeding tube just to the right of site (model shown here with newborn sized diaper at end of tube to catch the various fluids and yuk draining from a veeeery empty tummy).

Act fast to get yours now, many features will not be available for long! But wait...if you order today you can also have the special "Million Dollar Toddler" option package that comes complete with insurance busting health care bills, Premiums and monster deductibles. You know ya wanna!

Happy Mother's Day

We made it off of the PICU (Intensive Care Unit) yesterday afternoon. Thank heavens. The girlie, she was still foggy and lethargic from all the hootie they had pumped into her the previous few days to keep her under. She is breathing on her own.

Today is a whole different story. By the end of her day she was trying to push her own IV poll down the hallway on her walk. She entertained herself booting at squishy soccer balls out on the terrace for a while, and then tried repeatedly to climb into the fountain downstairs. There are a ton of coins in the fountain, and I cannot get over the creepy feeling that she wants to get a few handfuls of change for a snack later on.

The new room is pretty great. It's large and comfy and it has an adjoining bathroom that comes complete with a shower. There is a TV that has a PS2, VCR and DVD a radio and a fold out bed for me to sleep on. There is a huge play room with books and toys and art supplies galore... all this is good because we will be here for anywhere from two to six weeks.

There might be funny or witty folks who could find some humor in this, or find the funny parts, I am not one of them. I am keeping my mind focused on the moments of joy, and the vision I have of Pearl running and carefree... but yesterday when the doctor gently scolded me for wanting to rush the healing process, because I was trying to find out what was the soonest we could move to the next phase, I started crying for the first time since the night before surgery. Huh... now that I think of it, it was when I was talking to her that I had cried that time too. She is apparently an awesome surgeon and doctor, but a mistress of the worst case scenario, and not a puller of punches. I felt very sorry for myself.

I wallowed in self pity all the way down to collect the last of my stuff from the PICU. As I was packing my stuff to go, one of the other mothers in the PICU waiting room noticed and asked if my baby had made it off the floor. When I told her that she was already upstairs that mom cheered with her hands in fists, pumping victory above her head. I gave her a short sketch of where we stood and then asked after her boy. Apparently he was born with only half a heart... but if this surgery took and then the next two or three surgeries, then he'd have a normal boy life ahead of him. There was another mom sitting on a couch nearby who had been listening intently, she offered her congratulations. I asked about who she was there for, and she told us about her baby girl who had a very rare form of brain tumor. Somehow it was in what she didn't say that stopped me cold, and after a short pause she finished that it was spreading down her spine and nobody knew what to do. Her baby is nine months old. Her name is Destiny. We all got very quiet, and we all three cried.

To my mom.... Happy Mother's Day. To all y'all women out there who nurture, love and cherish... Happy Mother's Day. But especially to all mom's who are losing or have lost their babies.

Happy Mother's Day.

Pearl's Motto:Eat The World:

Well, we got our miracle... surgery is done and now it is all about the recovery. It is gonna be a longer road than you might think would be warranted for a measly pinkish clearish sequin not quite the size of a dime.



Then again, you leave it in a body for as long as this thing appears to have been in Pearl's throat? Well, a few months on a feeding tube may seem like small potatoes, or I guess it would be liquefied potatoes. Whatever. The important thing to remember is that this may in fact, be the cause of her problems, the entire cause, and nothing BUT the cause.



I will tell the tale, but right now I'm gonna sleep. It looks like she will be at the hospital for at least two weeks... so there will be PLENTY of time to give you all the TMI details.

Guest Blogger here

Well, this is Bon's older sister Robbie, and I'm covering while she's in the hospital tonight with Pearl. She took her to the doctor this morning, who sent her to the ER straightaway. They've done more tests, and apparently there's something MORE still in her throat! They think a tiny piece of plastic, and it has caused swelling, scar tissue and no end of trouble in her little throat. Tomorrow they operate, and it could be simple, or it could be very, very complicated. Her recovery could be from 1-6 weeks in the hospital, so Bonnie asked me to ask you to please pray hard tonight. She needs much in the way of divine help and good auras. Bullets need dodging over there.

House

This is a guest post from DadGuy as Bon wanted to post these but was unavailable to do so this morning.

Pictures of our house and yard that we worked on last saturday.

Close Call

I think about quitting blogging. According to Dadguy I contemplate it out loud about once every two weeks.

This past week I very nearly did the deed. I had my swansong post half written... mind you I planned to have the addendum stating my right to take it all back and come sniveling back on bended knee. But I was this close.

I am having a crisis of some sort over her in Chaosville. I am afraid that I will never fulfill my dream of writing and publishing. I am afraid that I am blowing the best opportunity I will ever have of getting published. I feel like I am watching everything pass me by, and that putting time into blogging is a distraction from following my dreams.

The reasons I am feeling this way a varied and complex, I could bore y'all with an entire post cataloging the points, reasons and alleged opportunities-being-blown behind my current unsettled self. But I won't. Really, it all comes down to the idea that I am what I do. Or more to the point: I am what I do and how well I do it.

My life until about five years ago had been pretty OK, mostly because I was able to put my oompah into things that I do well at. But the job of SAHM is the most difficult and unquantifiable job I have ever had. It seems to come entwined with the jobs of Physical Plant Manager, Caterer, Teacher, Staging Coordinator, Events Planner and general Behavioral Specialist. I haven't the foggiest clue as to how well I am doing at this job, this lifestyle. I am paddling as furiously as I can, and the best I seem to do is to keep my head above water. Yeah, I am the first to acknowledge that I may be doing well in some areas, and I know that I cannot expect to be great at everything...

Gaghk! How tiresome this is when I write it all out. I sound every bit as lame as I feared I would typing these lame words for you to read. Yeah, go ahead and ask me about my non-existent manuscript that I am so hot to get published! How are the illustrations coming? Well they aren't, thanks for asking.

It's time to get my Zen on and just chill. But how is that done? How do you define yourself if not by "what you do and how well?" How do you accept what is, and find joy in it... the day to day of it all?

So any hows... for today I still blog.