A Brand New Day

Today is a brand new day.  A day to start a new way of doing things.  It's push time.  Starting today, we are pushing the oral feeds, hard. So far today, she's had mashed banana, applesauce, mashed potato salad, yogurt, ice cream, and the latest, greatest, freeze dried strawberries and bananas.  I have Andi holding the piece of fruit and feeding herself, or just handling the food. It's a start. An experience.  After awhile, I will top off her "feed" with 2 syringes of blenderized food pushed through the g-tube.  I am hoping to quickly increase her oral intake and decrease her g-tube dependency.  I figure if I can push on the signs and verbalization, I should really start pushing on the other two areas she needs to focus:  oral feeds and walking independently.  So, between the feeds, the gait trainer, and the exercise ball, we should whip this little bean into shape a bit quicker. 

Normally, Andi would get three syringes of blenderized diet via g-tube.  One syringe is 60 ml.  So, 180 ml, which based on the b.d. calculations, she's getting a little more than 180 calories per 180 ml of food.  She probably won't initially take 60 calories by mouth at first, but, as she strengthens both her swallow, timing and desire - I think, no, I know she will take off. 

The tough thing about CHARGE Syndrome, is that it isn't just one battle.  It would be one thing if she only had to deal with hearing issues.  With CHARGE, it's a multitude of obstacles to overcome.  Andi's hearing, feeding, and balance issues are keeping "development delay" an everyday obstacle we work to overcome. 

I was watching her sleep this past week, because honestly, she's been sleeping next to me at night lately.  She seriously breathes like she's running a marathon.  I wonder if a breathe right strip would help.  I don't see her allowing it to stay on, but, I'm trying to think of things that the Dr's don't - which, sorry - is a lot.

Hopefully, the impending surgery will alleviate the work her body does when it's supposed to be resting!  Still waiting on that verdict, and timeline. 

In the meantime, she EATS!  It's a brand new day.

Good News -&- Bad News

"Gabba!" she says as the show comes to its conclusion. "All Done!" she repeats a few times to make sure I know it's done.  'ba gabba!' and some rumblings... I hit a few buttons to put on another episode.  Andi enjoys this show, Yo Gabba Gabba.  It uses music, bright colors and some interesting characters to teach kids a variety of things like sharing or basic manners. It's pretty cool, although, I find myself singing the songs often - which is rather annoying.  As we come to a close on another long week, we have good news and bad news to report.  First, the good news.

Andi saw the audiologist team for more hearing tests.  This time, we tested her unaided and she again, blew their hair back with her improved results.  They reprogrammed her hearing aid and essentially, 'turned it down' some more.  Yippie! This is especially impressive considering she's getting over that nasty cold, that has a bit of fluid in her ears.  The other piece of good news is that a second call to Kaiser has confirmed that the plan we're on DOES cover hearing aids for children, up to $4000. or 20%.  I still don't know what that means, but, it has to be better than the $660. we were expecting to have to whip out of pocket because the first Kaiser representative I spoke with said we weren't covered. So, this is great news, because I was fighting the urge to really go off about how messed up it is that her hearing aid wasn't covered.  We recently added secondary coverage through Daddy Bean's work, in the hope that it will help us with the many co-pays that add up quickly.  So, it is our hope that between the two, we won't be standing out on the highway on-ramp with a cardboard sign begging for spare change.  Can you imagine that sign?  'MEDICAL BILLS SUCK.  Donate!'

Well, now for the bad news.  The ENT, who looked about 20 years old, agreed with the original diagnosis -- Andi's tonsils should come out, and possibly her adenoids or a part of them.  He said those two things, coupled with her small nose/air passageway, would most likely be the cause of her work-at-sleep, and sleep apnea.  I asked for the surgeon at the hospital to do it, as was recommended originally.  He luckily hasn't grown an ego, and was rather cool about it.  He put in the referral, but wasn't sure if it would go through, as Kaiser don't want to do referrals, if someone in-house can do the same job.  Understand it, but, in six surgeries, the one and only that was done by the KP surgeon, didn't work out too great. So, sadly, I have a negative image in my head of having the KP people do it.  That's rather lame of me to lump them all into this negative category, but, sorry... I'm the one that had to deal with the leaky g-tube for 1 year and 4 months.  I'm the one that had to deal with the multiple appointments about the same problem.  Had to deal with all the times we dealt with the broken down, raw skin around the leaky site, where the stomach acid burning the skin.  I mean, can you honestly blame me for being reluctant about anything?  Just honor me, honor the Bean and get out of our way!

I can only hope that this surgery, surgery #7, will resolve the work she does at night & sleep apnea, which I believe is the reason she struggles to put on more weight.  It's like she's doing a zumba class at night, all night long.  Can we stop at lucky #7, please?!? 

We're waiting to hear who is going to do the surgery, and then we'll be able to work with their scheduler to find out when we can get in.  I'm hoping it's soon, as Daddy Bean has to travel for work this next month, and Andi Bean's 2nd birthday is only one month away. 

Well, one more piece of good news before I wrap this up, Andi Bean is blowing away the peeps she works with with her command of 80 signs, and quite a few words.  She's really absorbing them all like a sponge.  I asked her today if she knew the sign for "wait!"  She's seen it before.  She sat and thought about it for awhile, and then she put her fingers out to sign 'wait.'  I couldn't help but laugh and praise her.  She's so amazing!

Signing Time: 74 Signs & Counting

http://www.youtube.com/watch?v=fkXoMz9XJ90&feature=youtu.be

So, I finally broke down and made a spreadsheet of the signs Andi knows. Our OT was at the house this week for the 6 month goal review and we estimated Andi was at 40 signs. Uhm, no. She's at 74, and counting. Here's a very long video of Signing Quiz #3, which is quickly becoming a wild Friday night tradition.

ER Visit -- good times!

Andi has come down with a cold, but this one has been a bit tougher than the others.  Andi spent the day working at breathing, coughing and unable to really catch her breath.  She's been extremely clingy, and sleeping for only short periods of time.  We called her pediatrician and he said it would be best to have her checked out.  They did an RSV swab, a chest x-ray, and a nebulizer treatment with blow-by oxygen.  Her coughing really subsided once we did that treatment, but now that she's home and has been sleeping this past 45 minutes, the coughing has returned.  They sent us home with a neb inhaler, to be used Hopefully, we can all get some sleep tonight, as we're all beyond tired.

Videos & Pictures!

Here are a few recent videos and pictures to share:

Signing Time #2

"More... What?"

Brushing Teeth!

Ginga Jr.-

ENT Scheduled

Our pediatrician called and left a voicemail Thursday.  He was working up at the hospital that night, and said to page him when I got the message.  I got it the next day...oops!  I hate the phone, and tend to ignore it.  When he called, we spoke about the KP ENT -vs- the hospital ENT and he said it hasn't yet been determined that she needs those tonsils out.  He said that was one opinion.  And basically, after a bit of song and dance, and sorry ... the company line, I lost the request to skip the KP ENT even though I reiterated it a "colossal waste of my time."  My argument did not fall on deaf ears, but, I gotta go through the system.  LAME!  In any case, we have an appointment with a specific KP ENT at the end of the month.  This ENT works out in B.F.E., a.k.a. 15 miles away- one way.  Luckily, our appointment is after a hearing test, so we'll already be halfway out there.  TREAT.  If it is determined that we need to go to the hospital ENT, I wish I could send KP a bill for my wasted time, energy and gas.  Oh well.  We'll see what happens.  Ultimately, the most important thing is Andi and her well-being and everything else doesn't matter.  It shouldn't anyway.

I played a bit with the design of the blog and voila! it's changed.  I left the "three Bean salad" photo header though... those are just too cute to replace.  Seems like it was yesterday, but, it was so last year!  Never want to forget how far we've come though.  So, with that being said, they stay!

Make That 18.5 lbs

Beano weighed in today at 18 1/2 lbs at feeding clinic.  Everything else is still the same. They were thrilled with her progress, although, they would like Andi to start getting regular speech visits through Early Intervention.  Hey, whatever helps the Bean.

Lastly, I got a call today from the KP ENT scheduler.  I'm about to stick my foot up some KP ... anyhow, I've re asked to see the Doernbecher ENT that would indeed do the surgery. Spare me the time, money and energy wasted on another fricken consult, puhlease!  *annoyed!*  I think my request was rather well reasoned with the kicker, 'Andi is already a multi-million dollar patient, this is not the time for KP to get thrifty.'  Fricken HMO's... Wait... fricken health care system.  IT'S BROKEN, PEOPLE!!!  You may not need it today, but trust me, one day you will be knee-deep like us and see what I'm talking about.  And if you saw how much is billed... yikes!!! 

In any case, we're awaiting to get in to see the ENT/surgeon and see what her recommendation will be.  Feeding clinic agreed with the swallow study lady, Nancy, that Andi's tonsils have got to go.  One night stay at hospital = $300., not to mention all the out-of-pocket co-pays we haven't yet touched for the year - probably $500.  *insert string of overused cuss words here!*  However, I will not stress about something that hasn't yet been even confirmed to be happening.  *Bring back the happy dance.*

Hey, I've got an 18.5 pounder... heading in the right direction.  We went to Costco again last night to pick up some gift cards and found this on an endcap:



I love the 'WTF?' expression.  She's still not getting the massive teddy bear ... our house isn't large enough to house that beast!  We kept the Bean and left the bear.  Although we did practice the sign for 'bear'!  There's always a lesson, right?

Beating My Head Against A Wall

Some days, I wonder why I even bother getting out of bed. Days like today have me beating my head against a wall, taken back, and really frustrated with disappointment.  This morning started with that rather emotion-stirring drive up the hill to the hospital.  This visit is to do a swallow study, #4 or 5, I lost track. However, you know you're there too much when you recognize everyone, especially Tom the radiologist, whom has been there for many tests from the start. After the swallow study, while we were reviewing the videos, the next team was setting up for their swallow study, and of course, we recognized all of them too.  "Hi Steve!"  I wish I was exaggerating, but, I'm not.

Andi's swallow study didn't go as well as I would have liked.  However, today's exam showed that Andi's tonsils were large, and almost an obstruction.  She asked if Andi snored.  "Oh y-e-a-h she does!" I continued... 'she seems to work really hard while sleeping.'  The speech specialist said the large tonsils were probably to blame.  She asked if we'd ever discussed a sleep study, I said yes, it had been mentioned and we were just about to follow-up on that at feeding clinic on Thursday.  She said, I think you should go directly to ENT and have them look, as it would bypass the need for a sleep study...the tonsils, as she saw it, are to blame.  So, we came home and wrote our Dr. for a referral to see the ENT at the hospital who did her last choanal atresia revision and ear tubes last September.  We asked to bypass the whole KP (Kaiser Permanente) ENT system, and just stick with the hospital.  If there is a surgery to remove the tonsils, the hospital is the only one that will touch Andi, so why not keep us up there and consulting with those whom will be doing the work.  So, sitting around (this was yesterday, as I didn't finish the blog)... I kept thinking how that was the 4th or 5th swallow study.  I'm wondering if her tonsils were large on those previous studies and we just didn't see it, or if this is a new issue, maybe brought on by allergies or such?  This is something I will be asking tomorrow at feeding clinic.  In any case, the referral is in, and we're just awaiting the scheduluer to call us for a consult with the ENT.  Yea, another appointment!  But wait... it gets even BETTER!  Remember, this post is entitled, "Beating My Head Against A Wall!" Yesterday afternoon, we had our consult with a Urologist.  At 2 months old, Andi was admitted to the hospital with what turned out to be a UTI.  We had a VCUG (Tom did it!) and it was determined she has bladder reflux, grade 3.  (1 = mild, 5 = severe). Bladder reflux is when the muscle that controls the tubes doesn't squeeze tight and it allows urine to go upward, and shoot from the bladder into the kidneys.  It's generally considered muscle weakness. The easiest, most effective way at managing this and preventing UTI's - which can lead to scarring in the kidneys, is a prophylactic or as we know it, an antibiotic.  Andi has been on a low dose antibiotic (amoxicillan) since August 2010. Initially, they told me that kids tend to outgrow the reflux (as the muscles grow and strengthen) and so, I asked our pediatrician to refer us to urology, so we can start that dialog to see if she's possibly outgrown her need for antibiotics.  As I've really outgrown the need to go to the pharmacy every two weeks!  This Dr., whom I will call Dr. P, (yes, I'm perpetually 12 years old), was rather on the ball.  He works clinic on the other side of town at Kaiser, but, he also works up at the hospital three times a week.  He said he wished our paths had crossed sooner, as he could've had our new VCUG prior to the swallow study, and had them all done on the same day.  In any case, we're doing a new VCUG and ultrasound to check her kidneys, her reflux, and he took her off amoxicillian, and put us on a new antibiotic.  He is going to save me a trip back out to B.F.E. and have our follow-up scheduled up at the hospital, in conjunction with the VCUG, which is mighty considerate.

I'm beating my head against the wall because it's a lot to deal with all these appointments, and our need to see specialists.  I try to keep everybody on the same page, and yet, I still feel like we still slip through the cracks in the medical system.  We are very versed in both the Kaiser and hospital personnel and systems, yet, those two systems don't work together in conjunction to spare us any oversight.  For example, the hospital system thinks Andi needs to get current on a lot of vaccinations, yet, we are current - but it's in the Kaiser system. Or when we go up to the hospital for something, we have to bring them current on all the appointments we've done at Kaiser.  Kaiser can look into the hospital system, but the hospital staff cannot look at the Kaiser system.  Well, unless a Kaiser physician on-site grants them temporary access to review a file or such. At some point, I would hope that these two systems would talk to one another, yet, my suspicion is that it is due to security issues on the Kaiser side.  For patients like us, whom are eight people deep on both sides, this lack of a complete visual on all things Andi flat out sucks. 

Lastly, Andi only weighed 17 lbs, 5.5 oz's, which is down.  I've given her Nutella and ice cream in between breakfast and lunch.  Hopefully, it will help.  But more so, I hope that we figure out what is causing her to work so hard sleeping, if it's the tonsils, bring on surgery #7... and let's allow her to at least hit 20 lbs by her birthday for crying out loud!!!  Hopefully we can get some answers and all the powers that be can align and let Andi thrive for a change.  This stagnate one step forward, two steps back is so frequent and overdone that might head might actually break through the wall.