Andi's Heart: One Year Later...

Today marks the one year anniversary of Andi's heart surgery, a complete AV Canal.  Filling two holes and making two valves out of one. It was a pretty complex surgery, and we are so extremely grateful to Dr. Stephen Langley and his team of angels!  Not to mention all the PICU amazeballs and all the other Doc's & Nurse's...especially the ones that enjoyed Andi so much, they came to check up on her recovery.  That is the lure of Andi Bean...  What an incredible year it has been!

Looking at Andi's chest, the marks of open heart surgery are fading. You can barely see where the central IV line went in, where the pacing wires came out, where the drainage tubes were, and even the chest plate scar isn't super obvious. 

Lighter mark on the left, above her finger is where a drainage tube came out. There are two of those on the right side, hidden behind the g-tube junk.  The right shoulder was home to the central IV, but it's not visible in the photo.  That's her new g-tube, the 'Mini One' button with a split 2x2 and a stomahesive wafer to protect the skin. 

Today, Andi got her button changed to the Mini One button.  It's definitely daintier, as it's more 'cute as a button'.  It's smaller, and the balloon is apple shaped instead of circular, so it's supposed to help minimize leakage.  So far, it hasn't swept my hair back as I just had to change her outfit again, but the split 2x2 slipped out.  I wouldn't be surprised if her balloon needed more water.  We shall see.

Andi also weighed in today.  She weighed 14 lbs, 15 oz's, so just shy of 15 lbs.  A year ago she was 8 lbs, so, it's pretty evident that the leaking g-tube is a major issue.  I have an email in to her dietican to see if we can increase the calories in her formula and reduce the volume.  As the more I seem to pump in, the more it seems to leak. Andi was measured yesterday by our new community health nurse.  She measured in at 27.5" which is almost a 2" difference since 7/5.  Problem is the inconsistancies of the length measurements.  Regardless, she's definitely gotten longer. 

So, today is a huge milestone.  One year since her 'rebirth' with a repaired heart.  We're forever indebted to the team that helped her through this!  You are our heroes and we're eternally thankful.  Now, if we could get the dang g-tube squared away so she received full nutrition, imagine what this kid could do!!!

Bilateral Myringotomy

Bilateral wha? wha? ...what?!?

**Welcome to our world!**

Today, the follow-up appointment with the ENT determined that Andi will need to have tubes put in her ears.  The name of the surgery is bilateral myringotomy with PE tube placement.

The placement of PETs is the most common out-patient surgery done in the United States.  ...(yeah, I'm totally copying the verbage from the after visit summary)...  The reason for placing PETs varies.  Sometimes it is to relieve a negative pressure in the middle ear which can cause future problems. Sometimes it is to remove fluid and allow the ear to aerate itself. Sometimes it is to cut down on the frequency and severity of ear infections.  (almost done copying the verbage...)  By placing the PETs, we [they] hope to allow an artifical (but very useful) way of ventilating the middle ear.  This allows the eustachian tube (the long paragraph above that I omitted from this post.) to literally calm down without an infection around to swell it  shut again. Hopefully, by the time the PETs fall out, the body's own eustachian tube is then able to take over the function of equalizing the middle ear pressure again.  80% of children who require PETs will only need one set. 

Andi's reason is because she chronically has fluid in her ears.  He's going to suck the fluid out and put the tube in, to help her ears drain and aerate.  One additional positive about getting this done, is that it could improve Andi's hearing in her good ear another 5-15 decibles...which would be huge on the scale of speech sounds.  We shall see.

Andi's surgery will be scheduled in the next couple of weeks. It doesn't require an IV or anything more than a gas mask that knocks her out, but, it's still a surgery.  He said it's a relatively quick procedure and it really only takes about five minutes to do his bit with the ears.

He also scoped her nose.  He said the passageways are still open, but they are small.  He's going to talk with their nose specialist about her small passages and  chronic runny nose and get back to me.  My guess is that person will want to take a gander, or they'll send us back up to the ENT surgeon at the hospital.  We shall see.

Sadly, Andi did not take a liking to this Dr. today. It's pretty funny, yet kind of sad that she hates all Dr's now.  She gets around them and more often than not, freaks out on them.  Screaming and crying... only calming when they go away.  I hope I don't start doing that too, as I totally understand her inclination.

A Weekend of Firsts!

We had a very, very busy weekend of fun and firsts!

First of all, we had a genius idea Friday night to get on ETSY and put 'g-tube' in the search field.  I found a woman selling a cummerbund similar to what I've been trying to create.  I told her in my purchase, that Andi's g-tube leaks awful.  She wrote back and said she had that problem with her daughter's g-tube and that problem resolved when they put in a mini-one button.  I've googled and will ask the powers that be about it.

Saturday, we ended up taking Andi back to the Oregon Zoo.  This time though, we took a picnic lunch and grubbed in the grass while Andi took a really good nap.  When she awoke, we started our exploration.  Andi made a few friends.

This trip to the zoo, we took Andi on her first choo-choo train!  She seemed to enjoy the trip through the forest.

After several hours at the zoo, we decided it was the weekend to take her to the Oregon Coast Aquarium in Newport.  So, we headed to the house to pack, pick up Mad, and secure us a hotel room.  We called about 20 places, and finally resigned ourselves to staying at the Proposal Rock Inn in Neskowin.  It's north of Lincoln City, which is home to one of two coast restaurants we know we like.  So, we headed into Lincoln City for dinner. Normally, we bring Andi into a restaurant environment in her car seat.  If she fusses, we hold her.  However, after holding her and resting her in her car seat, we got a wild hair and tried Andi in the restaurant high chair.  At first, she braced herself with a bit of fear in her eyes, then she made herself at home.

The next morning, we spent a bit of time on the beach and let Maddux enjoy a nice fresh water swimming hole he discovered. After that, we packed up the truck and headed south to Newport.  After standing in a huge line for a half-hour, we finally got through the entrance.  Andi is a big fan of the fishes in the aquarium.  She always seems totally mesmerized, that's why we thought the Oregon Coast Aquarium would be a lot of fun.  We were not disappointed.  She was very engaged and put her hands up to the glass, even chatted with the "fishies!"  I was going to video tape the chatter, but all the other kids were a bit too loud. The walk-through shark tunnel was pretty cool, but she didn't seem too excited by the sharks, just the bright colored fishies seemed to entice the chatterbox.  My favorite was all the times she waved "hi!" to the fish. 

After the aquarium, we went into town and had a super yummy lunch. 

Our only problem this weekend was the junk in Andi's lungs.  She's been puking almost every feed after coughing.  I'm guessing the junk in her lungs is making her gag when she coughs.  We had to go to the outlet store for not only a few warmer clothes, but for more blankets, as we'd gone through all of ours trying to clean her up.  It was a fun weekend, full of unforgettable firsts.

Living High On The Hog!

Today, we had our last dose of Augmentin, the antibiotic for the ear infection.  Unfortunately, Andi also came down with a cold this week.  Luckily, she's doing much better, and now is just fighting to get the junk out of her lungs.  Lil' beast won't nap again today... so, I figure, she MUST be feeling better. 

My super-duper friend-o-rama, Julio, lent me her sewing machine.  What an amazing difference it has made, in speed and helping me lay off my choice vocabulary.  I have been Martha fricken Stewart sewing Andi some cummerbunds.  Sadly, the six I made with the material I bought, are useless until she grows a few inches in the waist.  I failed to realize that the material was super stretchy... and so, they suck. So far, the best bet is a tight cotton flannel receiving blanket cut in half.  Better yet would be getting rid of the leaking disaster ... *insert crickets humming here.*  I just had to strip her high chair cover to wash it, again, because, she came off a quick bolus of pedialyte, and had a wet tush, because of the leak on the last feed.  **I'm way beyond, 'calgon!' here.**  G-Tube disaster continues.

In any case, last night I saw a baby girl in a restaurant.  Her Mom was walking her around, holding her hands above her... I don't normally ask, but last night, I asked, 'how old is she?'  "10 months!"  I think my jaw dropped to the floor.  I mumbled some stuff about Andi and why I was asking.  I asked, 'do you happen to know how much she weighs?'  I think she said 26 lbs or so.  She must've seen the look of shock or jealousy on my face because she added, 'she's in the 98% in weight.'  *editing my cussword*.  I found it depressing.  Andi's doing great... no doubt.  It's just every once in awhile you let a little bit of other's reality in and get a little b-slapped in the face.  It stings.  But then you dust yourself off, put on your big girl pants, pour an extra large glass of wine (...uhm, yeah, sometimes!) and then you get over yourself. 

Tonight it's O'Doul's.  Yep, another wild Friday night. Me. Bean. Mad. Laundry. O'Doul's. I'm sure everyone is just wishing they had it so good! 

Ear Infections

We saw the ENT the other day and he is treating Andi for ear infections.  You know it's bad when the pharmacist hands you the Augmentin and asks, 'wait, weren't you just on this?'  "Uhm, yep!"  We're to see him again in two weeks, to see if there's still a fluid build up in her ears.  He also might scope her nose, to see if he can determine why she has a chronic runny nose.  He said if the passageway has narrowed, her nose might not be able to drain properly. Andi also seems to be fighting off a bit of a cold.  She's been coughing and fighting with some thick saliva & a not uncommon, runny nose.

I've been pushing her feed, which is causing more leakage.  I checked the balloon in the g-tube and added an additional 3/4 ml of water.  Today, I pushed the speed of the feed a bit, and she's puked all three feeds.  No dice. 

Andi has discovered the outlet where the TV/electronics and surge protector plug into the wall.  She's attracted to it.  Sadly, she's more attracted to it than the weatherman.

Well, I just changed her outfit and she's rolled around on the floor for the past five minutes, and now her outfit is wet.  JOY!

Video Star

These were recently shot with my phone.

"Chatty Cathy!"

"Silly Bean"

"Cranky Pants & Ham"

LIfe With A Leaky G-Tube: cummerbund

I can't recall if I mentioned in an earlier post that the g-tube surgeon suggested we lay Andi down at a 30 degree angle to give her the g-tube feeds, as the solution to keeping it from leaking.  I said that those instructions bicker with other things we are to be working on, such as oral feeds, sitting up -- which works stomach and back muscles, and increases neck strength.  That also doesn't stop the leak from the next two hours which Andi is either rolling around on the floor, or working on different therapies - such as, sitting up.  Frustrated and baffled that my lowly liberal arts college bachelor degree sees that this isn't a solution, yet this surgeon with all his medical school & residency, and years of experience...thinks that this solution is going to fly?  I may have blond hair, but I'm definitely far from dumb.  I ain't buying this solution, as it's not a viable solution to fix this leaky disaster.

It still leaks.

My mother-in-law & sister-in-law were talking and came up with an idea, what about a cummerbund?  While we were in the Bahamas, Poppa B & Ginga fashioned themselves a cummerbund using a receiving blanket, and then wrapped it in a long strip from a roll of sticky Velcro tape.  It worked, and they cut the amount of laundry considerably.  However, it was rather bulky, and probably too warm for summer.  Sadly, it did not stop the steam rolling Bean from the confines of pillow surrounded sanctuary on the floor.  Nothing can confine the Bean.  So, when we were back in Alabama, Ginga & I went to the fabric store and picked out all sorts of cute fabrics.  We bought some iron-on squares of velcro.  It seemed the perfect plan.  They looked super cute.  However, they did not hold back the flood, and with washing, the velcro would lose its stick.  We cut a receiving blanket in half, and that seemed to trim the bulk.  We went back to the sticky velcro tape belt.  Today, I went to the store and picked up a hand-held stitching machine and sewed some velcro onto strips of receiving blankets.  So far, it seems to be working.  It's not as cute as the fabric with multi-colored "doggas" on it, but, we're on our way to dryer days!!!  At least, that's our hope!

So, we won't be feeding Andi at 30 degree angles, that's just not realistic when we have so many other things to work on and accomplish.  Plus, it doesn't save us from post-feed leakage.  So, I wave my favorite finger at that suggestion with a sarcastic smile.  'uhm, yea-ah!'