Seperation Anxiety

So far, the Erythromycin doesn't seem to be doing diddley squat.  The leak continues. A few people I've spoken with suggest that going back into the hospital might be a good thing, as it might get us a step closer to getting rid of the g-tube.  I guess I'd like to remain in denial that there could be a problem, and just keep my Bean home.  Plus, we leave on a red-eye Friday, April 1st - there will be NO disruption to our plans for a vacation, a trip to see Poppa B and Ginga.  I will play golf with my Dad. I will enjoy some SE sunshine. I will be living high on the hog in New Orleans, while the Bean gets spoiled rotten by her grandparents.  Yeah, I really don't want to preface our first vacation with mini-stay at the hospital.

Andi's eating really well, and I've started a food journal to showcase what she's been eating orally, when, and if/when she spits up.  She's been spitting up more, just like she did early in the week last week.  Don't know if that's getting used to the new medicine, a digestion issue, gas build-up from eating orally, her cold and its post-nasal drip, or maybe the food is too rich.  Maybe if the GI specialist got off their duff and got us in to see them, we could start to narrow down that list of options.  I'm usually a patient person, but I'm starting to lose patience waiting on them. 

I've figured out a few things on her oral feeds.  I used to think that when she stopped opening her mouth, she was done.  However, I've come to find that if I give her a minute or two, she'll start up again.  Or, if I give her a couple sips of water, she'll start back up on the food.  I've also been trying to offer up more than one flavor too.  So, she seems to be eating more volume for me now, she's definitely eager.  She sits up well in her new high chair.

So, we'll go see the Dr. again on Monday and see how her weight is doing.  I'll bring her food journal and my denial, and we'll see what he concludes.  If she does move back in, maybe I'll get one of our plush suites, so that I can stay with my Bean too.  I can't imagine not hearing that chatterbox all day, or getting those first morning smiles.  I think only a New Orleans mini-break can separate me from my Andi Bean.

Another Step Forward, Another Step Back - Andi turns 9 months old!

So, yesterday, we went to see Andi's Dr., whom, we honestly see way too much of.  Love him, but, dang... I see more of him, and the pharmacy, than I see my friends. It didn't help that I felt like death warmed over.  In any case, let's start out with the positive news.  Andi had her first actual poop.  I know, that's gross, and I'm not trying to be funny, but honestly, that is how you judge a lot of stuff...based on the poo.  The Doc's and students at the hospital agreed with me on that... so there, it's medical and therefore, not gross.  So, she's had a couple little turds from her day of solid foods.

However, her Dr. is concerned about her weight gain plateau.  She's been weighed three times in February, and is still not up to 13 lbs.  She's only putting on a few oz's at a time.  Keep in mind, we've added Polycose to her formula, to increase the calorie intake.  She should be packing on pounds.  She is however, growing in length and head circumference. 

Height:  2' 2" (8.10%)
Weight:  12 lbs, 13 oz (0.04%)
Head Circumference:  16.26" (1.44%)

So, we stopped the Reglan and started the other medicine that helps flush food out of the stomach into the intestine, Erythromycin.  It's also an antibiotic.  We are supposed to take this for a week, and then reweigh.  Her Dr. is concerned enough about her weight that he suggested putting her back in the hospital to monitor leakage, try to increase,  speed up the process of seeing the GI specialist, and come up with a new game plan. So, we have a week or two to determine if we can increase her weight, else she's going back in.  I also pointed out that it's a new year... which means, our hospitalization co-pay starts all over.  That means, $300. a day, up to $1500. per hospitalization stay, with a cap of $2000. for the year.  While that is not bad, at all... it's still a lot of money.  So, we'll be pushing every calorie we can into our lil' Bean with the hope of not accruing more debt.  Plus, I can't imagine Andi not being in her bed next to me at night.  I'm too attached now, and I don't think I could leave her up at the hospital by herself anymore.  She's much more alert and aware now, she'd notice being on her own and wouldn't like it.

She has the same cold, but luckily, it hasn't attacked her like it has me. I honestly haven't felt this bad in a decade.  It's time for it to go already.

So, think fatty thoughts for our Bean!

A Breakthrough?

Yesterday, Andi spent the day with her Grandma and one of her aunts, while Daddy Bean and I went for a day of skiing -- our first full day off together.  While skiing wasn't a great idea for our colds, it was really good for all of us. One reason we don't get a lot of time-off is because of Andi's g-tube feeds.  Most people aren't comfortable with attaching/detaching the Mic-Key, or programming the pump, or dealing with the glorious stench of leaking Alimentum.  Because of this, it's quite an undertaking for anyone to watch her.  So, yesterday, we figured we'd just ask Grandma to work on her oral feeds, and not deal with feeding through the g-tube.  So, Andi went without her four daytime bolus feeds, and instead, plowed through almost of three containers of food we brought:  pears, green beans and bananas.  Apparently, she puked some bananas, but when we got home that evening, we promptly got out another container of food, and she plowed through most of it!  So, in the course of the day, she ate almost four containers of food.  Probably not enough calories, but... that's HUGE!  It just goes to show that the g-tube is preventing hunger, preventing the natural instinct to feed. Although it does have it's purpose, the g-tube is probably holding Andi back.

I've emailed Andi's pediatrician this update, and we have a late day appointment with him to check her weight.  This is to help us determine if the Reglan is useful or not.

We went out and bought Andi an actual high chair.  Our plan is to start creating the traditional dinnertime ritual, and other meals.  One thing I saw online, was letting the kids experience the food:  play with it, feel it, smell it... so we're going to try to start incorporating all that into her daily food experience.  All in attempt to help entice even more of a breakthrough.

The Standing Activity Circle Of Fun

We haven't done much work today, but, on a whim, we decided to try the standing activity circle of fun.  With some blankets wedged around to help stabilize her, Andi has enjoyed her new toy that has been sitting around collecting dust these past four months or more.  I think this new device, in conjunction with all the others, can only help strengthen her neck and stability -- getting her closer to sitting up on her own.

I shot some photos and couldn't decide which I liked the best -- so here are all my selections:

Looking To Catch A Break & A Super Sad Farewell

After a restless night of getting up, turning off the home alarm, opening the back door, waiting and waiting, the tossing, turning, standing, shifting, and resitting briefly on the bed -- Andi and I took Maddux to the vet this morning.  Urinalysis showed white blood cells -- evidence of a bladder infection. So, lil' Madder Bean is on antibiotics.  Oh, and chubs magoo is 'overweight' at 99 lbs.  For a dog with horrid arthritis, extra weight is his worst enemy.  However, due to his arthritis, we have been limited to what type and how much exercise he can physically tolerate.  In a perfect world, we would have a heated salt-water pool for Mad to swim in ...chlorine pools suck -- they dry my skin and turn my hair green. In any case, the vet is supposed to call me when they have his blood work results in as well.  Hopefully everything there comes up clean.  My worst fear is Madder Bean getting ill.  I think that would definitely send me way over my tolerance limit, and I'd have to go postal.

So, last night, I was able to read a few blogs of parents who have successfully weened their children off the tube.  One was a g-tube, one a NG tube.  (NG = tube that goes up the nose and down to the stomach. Andi had one of those just prior to getting her g-tube.  Before that, she had an OG (mouth to stomach) tube because her nose was still healing from her choanal atresia surgeries.)  In any case, one family documented their daily experience at the feeding clinic in Austria.  Made me want to go there bad.  Although, I did the currency conversion and I think the trip would cost more than my car did.  Uhm, yeah... no thanks!  However, based on what this one family wrote, it honestly made me feel like we could successfully ween her ourselves.  It didn't seem that complicated, at all.  The hard part would be being patient with her, and waiting for her to get hungry enough to make it happen.  She likes to eat, she just doesn't eat enough....(keep in mind that she's got the g-tube feeding her four times a day for an hour each time, and then overnight for ten hours.)  This family had the g-tube, and the child did not eat at all.  So, we're one-up there. Instantly, they cut this kids feed schedule (same as ours) to one feed by g-tube during the day (when the kid was asleep) and cut it in half at night.  Get the kid to experience hunger.  Surround the kid with different foods and make it fun.  It was very descriptive and I intend to have Daddy Bean read it.  That just wasn't going to happen during the Blazer/Faker game -- and certainly not after when the stupid Faker's won when we should have...

Another website I read last night was a professional site describing the characteristics associated with CHARGE Syndrome.  It was rather illuminating, although a little frightening about some of the difficulties she will face. I still haven't done a lot of research on CHARGE, but, was looking to see what I could find out there about the digestion issues.  I haven't got there yet in the booklet.

In any case, we did a lot of supported sitting up in the vet's office, and Andi seems to be picking up her head more to help herself roll over.  We haven't had the chance to work on food today, but, she did just take her Tylenol by mouth - instead of through the g-tube. I'm seriously hoping this cold miraculously stays out of Andi's lungs.  It's a nasty cold and it's attacking my lungs now.  Her Dad is actually ready to go to the Dr., and he hasn't been to the Dr. in so long that his Dr.'s office no longer exists.  So, hopefully we're spared the tenth level of hell and Andi's lungs are not involved this time.  That would be so nice, because I honestly don't know how she'll do with this deep hacking cough.  Maybe we can all finally catch a break!?
 
Lastly, we have to say a super sad farewell to our beloved Joel Przybilla & Dante Cunningham.  Two of my favorite Blazers were traded to Charlotte today. Joel is a fierce player who wouldn't take it from anyone; and Dante is fast, smart, and could help on both sides of the court. I still maintain that Dante will go far. It sounds like Joel might retire, which is probably incredibly tough for him since he just fought hard to come back from knee surgeries.  Oh, it's a sad, sad farewell today in Blazerland.

Energy Sucking Sickos

Since I moved to Portland in January 1996, I find I get sick a lot here.  Every month during the winter, and every other month in spring, and once during the summer.  Oh yeah, it's a real treat.  One Dr. I saw long ago, suggested perhaps I'm allergic to the mold here.  As much as it rains here, duh...mold.  So, here I am battling my second version of the cold in our house, and sadly, Andi is battling it too.  She's got a stuffy nose and it's apparent she doesn't feel well at all.  This morning, I awoke to her coughing, which turned into gagging, which turned into a river of Alimentum.  Great way to start the day.  Hey, at least she got a bath first thing! And yea, more laundry to do!

I just sent the one week verdict to her Dr. on the Reglan.  I don't think it's working.  She's still leaking, and now seems to be puking once a day.  However, the wound care nurse set us up with some product called stomahesive yesterday, and that seems to be working on absorbing the leak.  However, when I have to change it (every six or so hours), it hurts her when I have to pull it off.  It sticks to her skin, and there are parts of her skin around her tube that are still pretty raw.  Ouch!

I heard back from the Mom who took her kid to Austria for that no-tube clinic.  She gave me a few blogs and groups to read, so we'll do that in all our copious free time.  Probably during the Blazer game tonight...oops. 

In addition to all the fun we've been experiencing, Maddux wanted to go outside about four times throughout the night.  Acting weird.  I need to take him to the vet for a check-up.  It's supposed to snow here today &/or tomorrow, plus, I feel like crap - so he's gonna have to hold on a few days until I can get there.  His vet is near the office, so, it's a good drive away.  Ugh.

Lastly, the gas and power company were kind enough to send out summaries of how our usage compares to our power saving neighbors.  Apparently, we're going straight to hell with an 18% higher usage than any of our green neighbors with rainbows shooting over them in all their glory.  18%.  Yikes.  Wonder how much that would decrease if we weren't doing a gazillion loads of laundry everyday?!  Plus, we're home all day, everyday.  Their figure doesn't really factor that in.  However, it just irritated me that they pointed all that out.  I just have visions of John Candy in Planes, Trains, and Automobiles, where the people are yelling at them, 'you're going the wrong way!' and he ends up honking the horn, and sarcastically waving "Thanks!', as if to say exactly what I feel for that report.

"Back To Life, Back To Reality"

Andi survived her first weekend ever without me, and Daddy Bean did great.  Although, when I returned, both were looking like neither of them felt very good.  But, the Bean had very big smiles for me, and was instantly cozy in my arms.  My girls weekend was a big treat.  College roommates, all with young children, stealing away for some R&R, laughs, and a bit of relief from the responsibilities of life. We went snowshoeing, something I haven't done in years.  Luckily, it was the perfect day for it.

(Trillium Lake - Mt. Hood)

I assumed I'd recoop on sleep, and get really rested while away, however, that was SO not the case.  Throughout the night, I assessed and reassessed my work with Andi, as I honestly did not sleep well without her.  I recommitted to more tummy time, more eager feeds, bumbo chair sitting, etc.  As much as I do, I don't feel I'm getting it done.  I've also asked my friends for help, something that does not come very naturally to me.  As my big sentence when I was young was, "I do it myself!"  So, I've asked them to come over when they can to help feed her, or sit her up... whatever, as I can't seem to allocate enough time to it myself.  So, today is day one, and we're just waiting for her to digest her last feed just a bit more, then we'll work on sitting up in the bumbo, and the last half hour before her next feed with be for tummy time on the wedge & boppy pillow.

The new med's don't seem to be drastically improving the leakage, but it is a little bit better.  We still have a few days to determine its effectiveness, but as of this minute, I'm tending to think there's more of a digestion problem.  It seems that the last ten minutes to an hour before her next feed, she seems to get some stomach ache or cramps of some sort.  I keep watching to see if this occurs every feed or not.  It's hard to say, as we have so many other things going on.  But, I'm trying to really take notice of when it happens.

Tomorrow we go to see the wound care nurse again, and honestly, the skin is still red and raw.  They might want to pouch the tube, I dunno.  All I can say is we can't continue to live like this, it's ridiculous.

It's time for us to go pick up MadderBean from his neighborhood doggie daycare.  He's grown neurotic, and we're hoping a day at daycare will help burn off all that bad energy.  He's acting funny at the sound of Andi crying, her hearing aid whistling, me raising my voice to tell Andi 'No!' (grabbing at her hearing aid, or at her button or Mic-Key), and will run outside and sit in the rain and cold, afraid to stay with us.  Yes, I've actually written Cesar Milan.  I know, I'm a dork.  But, Maddux is the best doggie in the world and I want him happy too. Aah, and so there it goes ... [sing along], 'Back to life, back to re-al-ity.'  (Snap).  Neverending.