"Listen to the mustn'ts, child. Listen to the don'ts. Listen to the shouldn'ts, the impossibles, the won'ts. Listen to the never haves, then listen close to me... Anything can happen, child. Anything can be." - Shel Silverstein

Wednesday, May 6, 2009

Good News and Voting Results

We got some very good news at Marissa's follow-up appointment for her T & A. First, she is healing very well from this latest surgery.  We were able to discontinue pain meds all together about a week afterward.  She was also able to tolerate her PMV (speaking valve) all day long about a week and a half afterward.  Currently, she seems to not be affected by the surgery in any way at all.  Yippee!

Second, the narrowing of her nasal passage has cleared up significantly.  At birth, one of her nasal passages was 70% blocked, possibly requiring surgery at some point.  During this last scope, the doctor determined that the passage is only slightly narrow.  She said it was so slight of a narrowing, she would not even assess a percentage to it.  She said it definitely will not be requiring surgery.  Marissa grew out of it!  Yippee again!!

Third, I asked that Marissa's case be transferred to Dr. E when Dr. P is out on maternity leave, and she wholeheartedly agreed.  Dr. E is the doctor that followed Marissa from the day after she was born till we transferred her care to Dr. P in November of 2007.  Dr. E is the one who placed her trach, so both Dr P and and I have every confidence he will work with us during her absence to help Marissa progress as much as possible.  I think when Dr. P went on bedrest, Marissa's chart was handed to Dr. K without anyone reading it first. She's not just a kiddo with tubes in her ears or chronic sinus infections.  She is a little more complicated than that.  So she needs a doc who is familiar with her as well as a little more experienced with her types of issues.  Of course, we would not be so worried about this if we weren't trying to get rid of this trach very soon.  :)

Lastly, Dr. P is going to allow us to downsize Marissa's trach so she can have a better chance at capping.  This is huge!  I was really stressed out about this because, in the past, Dr. P has always said she is not comfortable with downsizing, but encouraged us to try capping anyway. Marissa has not been able to tolerate the cap for more than an hour at a time because the tube in her throat is just too big for her to breathe around.  We need to make the tube as small as possible. I likened it to telling someone that they are going to learn to drive a car, but there is going to be a brick wall in front of them.  There is no way to move the brick wall, no way around it, they just have to learn to drive with the brick wall in front of them.  Impossible.  I came fully prepared to argue my case for Marissa, and it turns out all that was not necessary.  Dr. P agreed to downsize the trach without any argument at all.  After this last scope, she said Marissa's jaw structure has grown significantly enough, plus the tracheomalacia and subglottic edema are completely gone, so there is no reason not to downsize. 

What, no fight??  Bummer!  ;)

So, on May 19, we will be going back to Dr. P's office to downsize in the clinic so she can see firsthand how Marissa will do.  We can pulse-ox her, let her run around and get a good feel of how she will do with a smaller trach.  I feel really good that she will do well and we can get on with capping and getting this trach out!  Woo Hoo!
OK mom, you don't have to wait any longer...

Without further ado, the results of the Rissa Photo Shoot Hairstyle Vote are in!!!

The top three are as follows:

With 13 votes ~ #1 on the list ~ 1/2 up, 1/2 down, two piggy tails

Also with 13 votes ~ #4 on the list ~ The Teddy Bear

And with an overwhelming majority, coming in with 24 votes ~We have our winner! 

The Train Wreck!!!

Wait... hold on, hold on everyone... This just in:

Due to some unforseen voting machine malfunctions, some ballots that were not filled out correctly, people unlawfully voting in a state in which they are not registered, some hanging and dangling chads, and one person voting multiple times (sorry Chelle, I know I said it was OK and this is my blog, but who am I to change the rules of the democratic voting process?), we have conducted a recount.  Who knew there could be such controversy on my little blog??  ;)

It turns out that this may not be a democracy after all.  Mommy Vote overrules all and the REAL winner is:

#1 ~ 1/2 Up, 1/2 Down, Two Piggy Tails!!!!

Sorry guys, but I warned you, I reserve the right to go with a style of my choosing.  Jeremy voted for this one also, so that works for me.  And to be honest, I chose the hairstyle that tied for second, so I think everyone wins!

Thanks for participating and I will post the pictures as soon as I get them.


The VW's said...

WOO HOO! I am so excited about your wonderful news!!! YAY! This makes me so happy!!!

And, I like the hair-do that you chose! I can't wait to see the pictures!!

As for democracy, it is so overrated. I tell our boys that at our house, they live in communism. They don't like me for this, but I think that's it's good for them! They'll thank me later, right?!

You are SO funny! Thanks for the laugh!

Nana and PaPa said...

Hey! I'm calling foul!! That's not fair to go with the Electoral Votes!!! The PEOPLE have spoken and you're going against that? What's up with THAT!!!???? LOL ROFLOL!! Ya know, no matter what hairstyle you chose, she is going to be just completely cute and..precious! I can hardly wait to see the pictures! But...just a suggestion....do ya think maybe the photographer could do maybe just ONE picture with The Train Wreck?? Just a suggestion..lol. We are absolutely ECSTATIC that she is finally ready to downsize and see how she does. We'll be thinking good positive thoughts. Love you guys...
Nana & PaPa

John Gensic said...

Congratulations on the good news! I hope Marissa tolerates the capping better this month! How exciting! I still like the train wreck and hope to see more pictures of it sometime.


Jessica mommy to Alex/ RTS said...

Wow, full of good news!
Cant you just get one shot with train wreck hair??? It really is adorbale:)

Colleen said...

Aww she's so cute! That is exciting news about the capping and possible trach removal..I will be rooting for you all the way!

Finding Normal said...

I do love the train wreck look! When did you sign up with the project? I signed up in October, I think, and haven't heard anything yet.

Michelle said...

Wow!!! A lot of people want the train wreck!!! Whatever you want right?!

Great news about everything! She is coming along!

Auntie Chelle

PS: I'm still very mad at you for not counting all my votes. Just like a politician! Still love you!

The round-the-worlders said...

Yeah, I'm sure J voted for the look you liked, it was either vote your way or spend the next 3 weeks sleeping in the garage:) Even tho you overrode our votes, I agree that the last shot should be "train wreck". What have you got to lose? We, too, are really thrilled to hear the good news. We will be praying for more.
Love, Dad and Arnie

Michelle said...

Well PTL for all the good news. Sorry I've been MIA. I have been reading but so much going on here I haven't had the time to comment as much as I want to say...hehehe.

OK, my head is just spinning about the capping and the T&A and nasal passage things. I'm wondering if Lillian will have these issues to deal with as well...although NOONE has EVER mentioned it. I'm kinda stressing out---also, they have never said we would have to do capping or downsizing. Our process, for the moment sounds pretty cut and dry, but now I'm starting to wonder. What size trach does she have?? Lillian is 3.5 peds shiley.

Ok, Next I LOVE the hair do you chose. That was my number one vote too!! Great minds think alike!! wink wink!

Next, to answer your questions, Lillian does not have a Nissen. I am inclined to believe there is secondary infections/inflammation that is causing her puk-age, and I think that only bc she doesn't do it all the time. That is the confusing issue. We can go weeks with no problems then she gets sick and everything gets out of whack.

Ok, that was like the longest comment in the world.

Lastly, thanks for you all your prayer and encouragement!! I pray for you guys every day too!!