G-Tube Pity Party

It's not very often I allow myself a pity party, especially offering it up for random consumption, but I find myself completely grossed out and upset from the appointment I just endured.  First though, in my freshman high school English class, our absolutely adorable, first year teacher, Mr. Androsky, taught us the value of writing in our journals everyday.  He said, it doesn't matter if you don't have anything to say, just start writing.  This lesson I learned a gazillion years ago, made it possible for me to take any situation in life, and write about it -- just to put it somewhere while I process it.  That being said, this is today's journal entry.  And if you are feeling squeamish or are easily grossed out, then today's read is definitely not for you.  I need to put this somewhere, and I need to share with Andi's friends, just exactly what she's going through.  The good, the bad, and everything in between.

Today, we saw Andi Bean's g-tube surgeon -- the man that installed the g-tube.  See, Andi's OT was here last week and said her g-tube was awful, leaked more than any she's every seen.  She suggested I contact her Doctor, whom referred us back to the surgeon.  We were called this morning for an appointment, and in their office just a little more than an hour later.  I awoke the sleeping bean, and stripped her down so the assistant could weigh her, 11 lbs, 13 oz's!  YEA!  After which she pitched a very vocal 10 minute (or longer) fit.  This fit, got the g-tube nice and gnarly, so I was rather glad that the surgeon would get to see what we're dealing with.  When he came in and we caught up on the problem at hand, he got to work.  **Again, I plan on being rather graphic, so ... consider yourself warned.**  For those that don't know about g-tubes, it's a rather simple, but very intimidating device.  Andi has a hole in her stomach that the g-tube sits in.  The part on the inside of her stomach is a balloon that holds water.  The balloon can be inflated/deflated to put it in or take it out. From the balloon, there's a plastic tube that is in between the balloon, and the button that sits on the outside skin.  The button can be opened or closed with a stopper, and to feed her, we just plug into that device and the milk travels through the tube, directly into her stomach. We put a split 2x2 gauze under her button, to protect her skin.  However, when the g-tube leaks, that gauze just gets wet and irritates the skin.  We're constantly changing 2x2 and putting on this concoction of cream and powder, to help protect that skin.  Since the Bean has been having teething fits, it has complicated things more so, because not just milk leaks out.  No, a good crying fit can cause stomach acid to leak out, and that just burns the already irritated skin.  Then it starts to bleed.  So you have this leaky device, with skin irritation, bleeding, hurting and her clothes soaked.  Well, I learned today that it gets worse. The surgeon took the water out of the balloon, and even though I've been trained on it, I've never done it.  He had me do it, and honestly, Andi was crying so hard, she pushed the water into the syringe, not me pulling it out.  So, I took out the water, and then he had me push it back in.  I thought, 'ok, this isn't bad.'  It was a lot like giving her meds... no big deal.  So, then he takes over.  He grabs a towel, takes the syringe again, takes the water out, and then completely pulls out the device.  He quickly puts the towel over the hole, because the stomach contents start gushing out.  Formula, mucus, stomach acid, blood.  He lifts up the towel, although continuing to dab at the stuff coming out - which smells great, by the way.  And we see the skin that the button hides.  Her skin is completely raw.  It's so incredibly broken down, despite our best efforts to protect it, it's just not working.  He took this opportunity to educate me on how to put in and take out the g-tube.  So I had to put the device back in, and thus, look right at this raw hole in my babies' stomach.  The surgeon decided to try this patch to cover the skin.  He said it might not work, but that we'd try that first.  So, basically, I will have to deflate & take out the g-tube, completely dry the skin - after all the stomach contents empty, put a hole in this skin protecting patch, place it on her skin by pressing down rather firmly, then putting the g-tube back in, then reflate the balloon with water.  I know this won't be bad after I do it a few times, but I find myself so completely grossed out that I'm making myself more and more upset.  I told the surgeon I've done a lot of stuff these past six months that I never thought I'd ever have to do, but, here I am... about to master yet another thing so far from my bucket list.  However, I've always said I'll do what I have to do for my bean.  I'm just not very excited about this one.  I keep wondering if that skin is going to be permanently damaged, so that one day, she'll be scared to wear a bikini.  Her surgery scars are barely noticeable, but this tube could be in for years!  (Until she is able to feed by mouth 100%).  I'm just sickened by this new task.  I hate that her skin is raw.  I hate that she even has to have a g-tube.  I hate that any of this b.s. is occurring.  It's so unfair.  And this task is just gross. It doesn't happen very often, but sometimes, I'm just completely overwhelmed with the sh*t we have to endure.  I know it could be so much worse.  Hell, I've witnessed kids fighting for life up at the hospital.  I know we really should be grateful that she's medically better.  It's just hard sometimes.

We've also been referred to a wound nurse, whom we'll go see to help us further with the raw skin.  Andi's not allowed any tummy time until this skin gets better.  The surgeon is not sure this patch will even hold.  But, it's a two person job to do this, and I know her Daddy isn't going to like this task any more than I do.  Again, I know a couple of times doing this, I'll be an expert and it won't seem like any big deal anymore.  However, until then, I'm grossed out, frightened, and totally upset that we're even having to deal with this. 

Okay, pity party over.  I can't stand myself whining about things too long.  Wow, how much I've grown.

On a good note, Andi is opening her mouth for the spoon and taking a few bites of food.  She seems to dig it, but we really need to get quantity up. Which is probably difficult, when she's getting fed via g-tube every three hours. We have an appointment with her feeding specialist on Friday.  Hopefully Andi will show her what she does for me.  Hopefully, she doesn't do the 'say-it / spray-it' like she does with me.  Nothing like some banana puree on the ol' glasses.  Andi thinks she's funny though.

So there.  Once again, Mr. Androsky's lesson from 1986 worked... I 'journaled' it and now, I feel better.

"ouwie" video

Our little pacie addict, complicated by teething, has a tendency to respond to a cold pacifier with what sounds like, 'ouwie, ouwie, ouwie'... it's pretty funny, cute and sad at the same time.  I was able to catch a poor glimpse of it today.  I mean, it's a great glimpse, but, it was one of the tough tantrums that takes awhile, and several frozen pacies, to calm.

Andi's dietary/nutritionist wants us to start increasing her feeds.  Our goal is now 38 ml/hour during her 10-hour overnight feed.  Currently, it's 35 ml/hr.  So each night, I add another ml to the rate.  If and when we get through that, then we'll work on increasing her daytime feeds from 70 ml/hr up to 75 ml/hr.  Andi's supposed to get weighed again next Friday, so we'll see.  She seems to be getting bigger.  In fact, tonight I decided I needed to take photos of her 6 month old feet.  They've grown, and I don't want to forget witnessing it.

I noticed again today that when Andi has her hearing aid in and you talk to her, she smiles more.  She doesn't seem to mind whatever she's hearing.  She wasn't as chatty cathy today, but, we did a bit of dancing and singing earlier today, and she seemed to enjoy it. I think I saw her follow sound by moving her head today.  Pretty exciting.

Here's the ouwie video... it's a glimpse of her vocalizing... oh, and yes, she holds her pacie by herself more often than not.  In fact, I've watched her in her bed find it wherever it fell, pick it up, and shove it back in her mouth. Our girl knows what she wants!

productive hours and the stupid g-tube

I just love how many people follow the Bean and her day-to-day life.  We're pretty smitten with her, honestly, more and more each day.  But it fills us with joy to find others find her just as fascinating, if not inspiring. The true warrior princess...she is a pillar of strength.

Our OT, 'occupational therapist' -- and no, she isn't working to steer Andi onto her career path, came over yesterday for her weekly appointment.  She was pretty vocal about Andi's g-tube and its leaking is 'by far, the worst she's ever seen.'  She said that it shouldn't do that, and urged me to contact her pediatrician to see if there was anything they can do to fix it.  I wrote him today and he has referred us back to the guy, sorry, the surgeon, that installed it.  He said he stocks product in his office, and it's possible that he can switch it out for something else.  I hope so... it's just such an icky obstacle.  Wet outfits, rashes, the entire skin surrounding the button is raw, lotions, split 2x2's to help keep it dry.  It's all a disaster.  Hopefully, there is a solution.

Andi will have to keep the g-tube until she's taking all her food via mouth, and thriving. I've got her to open her mouth a little to accept the spoon of food, but it's a very small amount she's taking.  I've shied away from the bottle, but the feeding specialist wants me to try this different bottle, which I used to have one, but no longer seem to possess.  I think I gave it away when I sold my pump, as a bonus purchase.  However, Andi should be sitting up and holding her head to accept solids (purees), but she's still rather wobbly.  I sit her upright in her car seat to feed, but, honestly, giving her a 'taste' while laying on her contour pad has worked just as well, if not better.

We're working on tummy time, and her OT brought over a wedge for her to work with.  We put the boppy pillow on top of this padded wedge and it makes it less of an angle that the Bean has to pick up and hold her head upright.  So, it enables her to take smaller steps and get smaller victories quicker.  I guess I'm a bit too eager for 'small steps' and 'small victories'... I'm continuing to try to work with her every opportunity I can steal, to get stronger and improve quicker. I figure the more we work at it, the faster we'll see results.  The problem seems to be that there aren't nearly enough hours in the day. Well, that I can actually stay awake and be productive!!!

Andi Bean Gets A Hearing Aid

Yesterday, Andi was finally fit with her hearing aid.  Initially, they said to let her wear it about a 1/2 hour a day, while she adjusts to hearing more sounds, as to avoid overstimulation.  However, yesterday, they said she could wear it up to 2 hours a day, 3 times a day... depending on how she does.  Honestly, Andi's had it on most of the day.  She's taking a break right now, because she seems sleepy, and maybe it's time for a nap.  So far, things have been going great.

Andi's first moments with the hearing aid:

Andi's first day with the hearing aid, having fun:



Santa's VIB (Very Important Bean!)

Last night, we took the Bean to go see Santa for the very first time.  In her Christmas dress, we strolled into the mall at almost 8 p.m. and right up to find a red carpet rolled out to our Bean, whom did not have to wait in any line.  Santa's lap was empty and awaiting our most precious V.I.B.!!!  We warned Santa about the G-Tube button... to be careful of it... and we got her positioned just so on his lap, and then the most incredible thing happened... technical difficulties!  Yes, as Andi's Dad ran the video camera, I shot about 70 photos of the Bean on Santa's lap, as I only paid to get three prints of one photo.  Oh yeah, the Bean scored.  Also, while the Bean socialized with Santa... a line started to build.  Our timing was right, and although the Bean was fussy the stroll out of the mall and the entire ride home... we got what we sought.  I am chosing not to share at this time, in case we use them for our Christmas cards... but if not, I'll share them soon!  As well as the video.

The feeding specialist made me reconsider the prilosec, and I've decided to restart that med.  A few nights of tantrums might be a bit of acid reflux, instead of just fits of teething rage.  Therefore, we've added the prilosec back in, and are consciously elevating her head again.  We had a bit of rough night again, but then Bean and I slept in until almost 10:30 a.m. to make up for all the hours we lost early this morning.  Hopefully, the prilosec and the frozen pacies will tame the beast, I mean, the Bean.

Andi Bean & Madder Bean

This video was shot the other night showing Andi's love for her fur brother, Maddux.

I've been using Maddux as a tool to get her to look left and stretch out that shoulder.  It seems to work better than anything.  She's mesmerized by the Madder Bean.

Cardio Check

*wrote most of this 11/30, but never posted.*

Andi had a follow-up appointment with her cardiologist today.  An echo cardiogram showed that Andi's doing well.  She still has a bit of leakage out the right and left side, but the one on the right will be helpful to him to determine the pressure on that right side.  After the heart surgery, the pressure on that right side was the reason to put the Bean on viagra (a.k.a. sildenifil).  He wants to do a sedated echo in four months, to reevalate if she's ready to get off viagra yet.  We are, however, weening her off lasix - (the diuretic) which she should be off in the next four weeks.  I was hoping for more, but, it's better than no change or worse, adding more dope.  He expects that leak on the right side to close on it's own, and will continue to monitor the left side, both are apparently minimal.

We got to catch-up with a few peeps that we know up at the hospital, including our favorite nurse.  Pretty cool to see them as visitors, rather than patients. They were happy to see Andi so big and doing well.  YEA! 

Andi's teething is starting to drive us nuts.  I don't know why, but the teething tantrums start in the middle of the night, every hour on the hour - or so it seems.  Sometimes it's every half-hour.  We got some baby ora-gel, but it didn't seem to do diddley squat, maybe even piss her off a bit more.  Her anger ball is a full body objection, with karate kicks, pelvic lunges and at three in the morning, totally groggy - that's pretty scary to try and hold onto that...especially having her feeding tube attached. I joked to her pediatrician, when asking for other suggestions, that I knew that whiskey and viagra didn't mix...  he wrote back and said a piece of cold celery to knaw on... hmmm... interesting.  He was pleased with our cardio-report as well, and is happy that her issues are normal baby things like teething.  He also agreed with me that we can stop the prilosec, which I admitted that I have not been giving her in awhile. Yippie. Down to four med's... soon to be three.  YIPPIE!

Today, we have an OT coming to the house, as well as her audiologist.  The OT will come and "play" with Andi and get her working on fine-tuning her motor skills.  The PT said the OT will likely help me work on the neck correction -- to strengthen and stretch that one side.  Haven't had much opportunity to work on feeding... but the appointments are starting to really taper off now.  Now, it's more just therapy appointments and infrequent follow-up's.  I still email her pediatrician, just to bug him and let him know we're thinking about him.  HAHHAA...