Turning Big Dreams Into Reality

Today, Andi and I attended the PNBA (Pacific Northwest Booksellers Association) regional trade show, an annual event.  In the past, I've had to work the show. But these past few years, I wasn't really available to help out.  It's an opportunity for me as an office desk jockey, to see massive amounts of bookies (people who publish & sell books).  It's interesting, and there's usually a lot of colorful hair & outfits.  So, today, we arrived and got to visit not only with one of my bosses, and my coworker, but a former sales rep was luckily stationed at a booth just next to ours.  So, she got to meet Andi in the flesh!  Andi was her usual charming self, and had her manners on.  After chatting for awhile, Andi and I walked the floor.  In years past, I never really looked at other people's junk.  That never really interested me before.  Today, however, I wanted to look.  See, I've been working in the book biz for almost 17 years.  17 friggen years!  And, children's books never interested me prior to having Andi -- I can't imagine why?!  But now that we try to read to Andi, a lot of the books I have bought or received, are pretty dang bad.  You know it's bad when I'm struggling to finish reading to Andi a five page board book containing maybe a total of 30 words.  Yeah, there are a lot of crappy books out there for Andi.  And, so, since I was in the environment, I wanted to see what all was out there.  So, I walked the floor, pushing a big 4-wheel drive stroller, and trying not to run over people.  It was pretty cool.  From what I saw, & in talking with my former coworker, who also is a Mom, I got grand ideas for my 2nd and 3rd books I want to write.  I am finding a fuel inside that only Andi Bean enabled me to see.  It's pretty cool.  Now, if I can only find the time and be diligent enough to make it all happen!  Oprah may have ended her show and book club, but there are people still out buying books, or downloading them.  Therefore, I'm anxious to get started on tackling my visions, before they escape me.

Yesterday, I met with one of my many nursing student friends.  (Oddly, I didn't meet her due to Andi.)  She is using Andi has her subject for a paper. She said she knows of a few nursing students that would probably love to help me watch Andi. I can't necessarily afford it, but if I can get them to take a background check at the county, the developmental disability services office, will help with expenses for respite care, if and when there's money in the budget.  It doesn't sound like that happens all that often, but, it's worth a shot.  They recently got their budget, and it's first come, first served - so that money is long gone by now.  However, if I can get someone in the system, next fiscal cycle, maybe I can get help paying for it.  Or maybe I should just write my book, and live high on the hog off royalty checks when that becomes a big ol' bestseller!!!  *insert snorting laugh here*  Honestly, the book biz is harsh, and there's a massive amount of product out there for consumption. However, I know my subject matters are not out there and dang it, I have a lot to say!  Plus, I'm funny, damn-it!

So, I have much to do, and now just need to find the time to make it happen.  ...and some more energy would be nice, and maybe ten pounds lighter, and if I could have ridiculous amounts of money, yeah, yeah, yeah... all big dreams.  Just have to take those big dreams and turn them into a reality, for Andi.

Overcoming Obstacles

Andi's doing well, although she's puking almost every feed.  When vented, it's explosive. "Pop! ...Pop! Pop! Pop! Pop! Pop!"  There's such a build up of pressure, it makes me wonder if this air was the cause of the hernia in the old g-tube site.  She's always had the issue with air in her stomach, but the old g-tube site allowed a lot of that pressure to escape.  I've ordered a few more farrell bags.  Might as well give them a try again.  Although, this system demands that the bag be above her stomach, which makes me wonder how to make that happen, when most of her feeds are in her high chair.  I usually put the backpack under her chair, so no one trips on the cords, or her favorite past-time of dropping her toys on the floor doesn't cause a pulled tube, if dropped on the cord.

On a totally different topic, yesterday marked a very important date in our family.  Yesterday was the 1 year anniversary of Andi's uncle Chris's rebirth, as a non-smoker! Andi's fight last year, her struggle, encouraged her uncle to overcome a huge obstacle and quit harming his own health.  I hope one day Andi is fully aware of the good her tough road has done for others!  We are all very proud and thankful that you did it bro!  We love you!

In Uncle Chris's honor, we snapped a few pretty cool photos this afternoon!  Now if we could just overcome one more obstacle, her funky long locks!

16.23 lbs ... and sitting like a BIG girl!

Yesterday, Andi had her follow-up appointment with the surgeon & surgery nurse.

First of all, she weighed in at 16.23 lbs! 

They are aware that she's not yet tolerating full feeds and puking almost every feed.  They want me to go back to the 36 calorie formula and try to get her tolerated volume up.  We're to come back in two weeks, and reweigh.  If her weight isn't dazzling, they want to put in a PICC line (an IV into her arm, not as deep as a central line), and do TPN in conjunction with the feeds, to insure she's getting enough nutrition and not getting dehydrated.

So, I'm slowing down her feeds and trying to put more in, slower.  This means she's tethered longer, but, we have to do what we have to do. We're also to supplement her feed with additional boluses of Pedialyte. It's either that or tether her and torture her to get a PICC line in.  Plus, the TPN poop is something I really don't want to smell again.  Ewh! 

After our appointment, we had to stop off at the grocery store to pick up a few things. It was time to have her try to sit in the shopping cart.  She did really, really well.

I know, she needs a haircut, bad!  I held onto her jumper most of the time, and although she got a little woobly, she did amazing!  Sadly, I was so distracted by our big outing, that I forgot to pick up some essentials like diapers.  Oops.  Therefore, we'll have to sneak out again today!  We're going to see the Kaiser ENT as a follow-up to having her tubes put in her ears.  So, we'll be out and about anyway!  Practice makes perfect!

Gait Trainer!

Andi's OT brought a PT today to make sure we're doing everything we should be doing.  They also brought us an "Gait Trainer" which supports kids standing, and walking.  My photos aren't all that great, but she did really well with it.

Andi's legs are pretty strong.  She can stand with assistance.  However, this device gives her more support, independence, and it teaches her how to get from point A to point B on her own.

Just waiting for her to finish her late feed.  She's only getting 2 oz's (60 ml) and puking before we finish. This feed, was at 54 ml, and we did the 60 ml over an hour. I vent and get a lot of air out, plus about 1 oz in the vent tube.  I will ask about this tomorrow.  The GI Nurse said they might want to do another gastric emptying test, but she doubted we'd need to.  I'm hoping we just need to get her stomach used to receiving full feed.  I hope so, I really find these feeding issues rather old & tired. 

Luckily, we finished our final TPN this morning.  Now, we just have to make sure we're getting enough calories per day. It's amazing how stressful this is.  Especially if the Bean is going to be Gait Training her way around the kitchen.  A great first step toward walking!

Sayonara Sucky TPN!

Today, we are getting one more bag of TPN delivered.  We're going from 18 hour cycle to an 8 hour cycle, having increased her g-tube feed.  The feeds have produced puking, but, I'm trying to take it really slow, especially considering she's getting all her calories from the TPN.  I don't want to overload her system.  I've noticed I've had to vent her stomach a lot more lately.  Since the air can't escape through the leak like the old site, so, perhaps that air is causing the pukes?  I dunno.  All I know is that I'm anxious to say "sayonara sucka!" to the TPN.  Having Andi tethered 18 hours a day is very taxing and stressful.  It will be nice to just have the g-tube feeds again and really work on our oral feeds.  That will seem like such a piece of cake, compared to this.

With all the puking, I've been giving Andi a lot more baths. You aren't supposed to get the central line ports wet, so that has been a bit of a challenge.  When the nurse came to change the dressing yesterday, upon completing the bandage change, Andi promptly puked on it.  Oops.  In fact, she just puked again, and when fussing, I was able to vent a lot of air out of her g-tube.  Where this air comes from? ... I do not know, but I suspect it's her chomping on Froggy!  In any case, I've noticed in all of these baths I've had to give, that she feels a lot heavier.  Fuller, more solid, heavy.  I'm anxious to see what she weighs this Thursday.  I can't wait.  TPN has done its job, but we're SO ready to say sayonara sucka!!!

Lighting Up The Town!

Tonight, we went to the Light The Night walk to raise funds & awareness for the Lymphoma & Leukemia Society.  Prior to meeting our friends to celebrate the health of one amazing survivor we feel honored to know, we had to get gussied up for our big night out.  When Andi awoke from her nap, well, when I woke her, we had a quick bath and then got dressed up to go paint the town a lovely shade of pretty.  As only a bean can do.  Prior to departure though, we had to snap a few pictures, to capture the outfit.  A cute little animal print and her jean jumper, all topped off with her pink Converse.  Yes, it's fall in the PNW, time to throw all the shorts, short sleeves and sandals into the donation bags.

"Do You Like My Outfit?"



*raspberry* "uh, I don't care if you like it or not!"

One thing I forgot to mention earlier, is something new I learned from the Peds GI nurse yesterday.  Andi can now be submerged in her bathtub.  I know that sounds weird, but, Andi has never been in water above her belly-button. My thought process was that if her g-tube leaked that much going out, how much would she take-in and... could it drown her?! She said no, but understood why I was so cautious.  She said it wouldn't be any worse than a kid drinking their bathwater. Because she has her central line ports, those aren't supposed to get wet.  So, therefore, I will try adding more water to the tub when she gets that line out!

So, the walk was pretty spectacular.  They handed out balloons with light inside of them.  Red balloons indicated support.  White balloons indicated survivor.  Gold balloons remembered someone.  It was pretty cool to walk with all these people, at night, in the rainy/misty fall Portland night.  What bothered me was all the kids I saw walking for the cause, let alone the one carrying a white balloon. It just seems like kids shouldn't have any concept of the word, cancer.  It's something that I'm very sick about, and don't understand why with all our advances, do we still not know diddly about diddly. This is a subject I intend to write about another time, as it has been rattling around the noggin lately.  I've got to find a place to put those thoughts, throw them somewhere, so I can get some peace.  If even for a moment.

Tonight, everyone was surprised how Andi stayed awake throughout the entire evening experience. I explained that she's really social and doesn't let herself sleep, seemingly for fear that she might miss out on something.  She was not pleased when I got her in her car seat, but before the truck left the parking lot, she was zonked out.  Other than seeing a lot of different people, she really enjoyed seeing the fireworks they shot off in honor of the walk.  It was a fun night, I'm so glad we were able to participate this year!

Getting Closer...

The stomach contrast study showed that Andi's stomach is recouping and functioning well.  We've started using the new g-tube site, with slow, small boluses. If all goes well this weekend with the slow increased g-tube feeds, we're going to start tapering off the TPN and continue to increase to full g-tube feeds by Wednesday, as on Thursday, the central line is coming out.  Andi's also been enjoying some disolvable solids in her high chair.  She hasn't been quite as interested in the banana pudding she has liked so well in the past.  I'll try something else next feed. I have thick liquids on the grocery list.  Not quite sure what that is, other than a drinkable yogurt or maybe a milkshake. But, I know I'll end up drinking the milkshake! 

Most importantly, Andi is now 15 lbs, 12.6 oz's. 

PROGRESS!!!

While in the hospital, her beloved dietitian said that based on Andi's charting and growth curve, she should probably be 17 lbs or so.  So, we're getting closer!  Another five days of TPN, Neocrack and some oral feeds, we should be catching up quick!  I made her Neocrack only 33 cal, as I didn't want to push her stomach too much.  The surgeon wants to get her off Neocrack, but, agreed we should only make one change at a time.  Perhaps by the six week mark, when we go to see him to put in a longer button, maybe then we'll be working on getting onto a different formula.  It was the perfect time to share with them my ant story!  As when we were on Alimentum and given the volume of the g-tube leak, how the stench of Alimentum lured ants to Andi's bed!  Although, now that I retell it, they probably thought I was just a horrible housekeeper.

The signs of waking at 6:30 a.m. are starting to show on the little Bean's face.  Tired eyes and yawns.  Maybe I'll get lucky and we'll get a nap today!  That'd be such a welcomed treat, as she certainly wasn't hearing my begging request to sleep longer this morning!  But, all in all, we're getting closer to where we need to be! 

Dissolvable Solids on a wild Friday Night!