Sedated Echo Results

It's been a very long day.  It's tough to get all our stuff together and get out the door as is, but when it's an early morning appointment - it makes for a very long day.  We sat in some stupid rush hour traffic, that turned out to be nothing more than a stall or accident blocking a part of the road - backing us up for a full 20 minutes. ANNOYING.  We arrived at Doernbecher's with time to grab a Starbuck's at probably the most profitable Starbuck's ever -- and surprisingly, there wasn't much of a line.  Andi was praised a few times for being so cute, but when a lady commented to others 'isn't she beautiful?' I had to chime in with a hair toss and grab that attention, 'why yes, I am beautiful, aren't I?'  After starting to say it, I wish I didn't -- the editor feature apparently doesn't work that early in the morning.  Oops.  I couldn't even look them in the eye when I joked and laughed at my dumbassness.  Yes, that's a word.  Embarrassed, we shuffled away - only to have two members of the audience follow us onto the elevator.  I think I did one of those shuffle your feet dances and whistled a happy tune, while I stared at my watch a few times...  It's essentially the equivalent of rotating blond hair around the finger.  Der-de-der-der-der!  Doh.  I quickly got off that elevator and found peace in a new audience.  Anonymous.  Yes, that's better.

We went for the sedated echo.  They basically gave her a bit of Valium through the g-tube, well, I did... and flushed it in.  Ten minutes later, Miss Stone was in the house.  Mellow and stoney-eyed...she was relaxed.  She did great, and endured the echo like a pro.  It's essentially an ultrasound of your heart.  After the echo, we got dressed and went back to Starbuck's for a refill of the ol' coffee.  I pushed some blenderized diet through the g-tube and then we went and waited to meet with our cardiologist.  First, we prefunked with the cardiology resident, that did the catch-up on all things Bean from the past year.  That was fun.  I heard myself say, 'sorry for the unload, but...'  She quickly added, 'no, that's fine - you guys have been busy.'  I think I threw in something about her only getting the highlights too.  After awhile longer, our cardiologist came in.  This cardiologist is the one who did a fetal echo twice on us.  Once at 20 weeks, when we were checking everything to gather data on Andi, as the ultrasound showed some abnormalities.  He said if we kept the baby, which we did based on the variety of tests and conclusions that were drawn by the Dr's and genetic counselor - that we were to come back at 26 weeks, so he could see her when she was a bit bigger.  We did and he at that point said he though he saw a pin-sized hole in her heart, but 80% of those close up by the time the kid was born.  Then we saw him since she was born.  He was the one that explained that not only did she have one hole, she had two ("Bonus!") and a valve issue - she had one large valve that needed to be turned into two.  We worked with him on medicine balances (sildenifil (viagra) and Lasix)... which was quite the undertaking as it was a tough balance.  Too wet (lungs) and she'd have trouble breathing, too dry (lungs) and she was dehydrated.  Although it seems like a long time ago, and some distant nightmare - it really wasn't that long ago.  In any case, he's know her since before she was born - so he was pleased to see her progress.  Her heart is good.  She still has some leaky valve issues - but there's no pulmonary hypertension or anything like that.  We updated the dose of Enalipril (lowers blood pressure to help ensure the blood in the heart can travel upward like it is supposed to), to adjust to her current weight. We're to see him again in a year.

So, it's not as glorious as I was hoping for - I was hoping to get off the medicine altogether.  But it's better than any bad news we could have heard.  So, we went to refill our prescription and have been trying to catch up on things, after fleeing the hospital with glee.  Andi slept as soon as we left, and stayed asleep the entire trip to the Kaiser Pharmacy.  It's been a long day.

Pebble In The Wheel

It's been decided that the KP ENT will do the surgery.  We're awaiting the scheduler to return my call to decide when.  This should be interesting since Daddy Bean is now facing two traveling trips in the next few weeks.  Then we have Andi's birthday coming up at the end of the month.  Stressed.

Tomorrow, we have our weekly OT appointment with our quarterly speech consult.

Early Thursday, we're due up at the hospital to have Andi's yearly sedated echo, and consult with her cardiologist. 

It's a busy time for us.

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.-