Monday, May 7, 2012

Simplifying Me: When it's impossible... (and Annabelle update)

This is what Mommy feels like doing on a daily basis lately.... JEALOUS! :-)
Sometimes, no matter your effort and dedication, simplifying becomes impossible.

Case in point: The Phillips' Family

I've been so excited about the month of May. While there were some things going on, it was supposed to be a month of simplifying, a month of getting caught up.

We only had ONE doctor appointment scheduled for the WHOLE ENTIRE MONTH. That has never happened before...

And I got the final word from her therapists that it was going to work to change therapy to all be on ONE day come the middle of the month, so we would only be making the drive to Nashville once a week! THis was HUGE!

But then last week happened.

--->My mom was admitted into the hospital on Friday (she was released to go home today, but prayer for her healing is appreciated!!)

--->Our garage sale my sister had at her house was rained out Saturday morning... so while we put it out after the rain stopped... the showing was dismal so we'll have to do it again later

--->And finally, I got a call on Friday from the Pulmonologist with some super bad news. When I first heard his voice, I was SO excited. I just knew he was going to say, "Wow! She just did amazing! Don't worry about oxygen anymore!"

Instead, it was "Well... Annabelle's results were not what we were hoping for."

Punch. To. Gut. I literally started shaking. Then my next thought was... He's joking. Like, being sarcastic and going to say, "They were much BETTER than we could have hoped!"

But my hopes were shortly dashed.

Annabelle's sleep study did NOT go well. Her results were extremely abnormal. She has severe obstructive sleep apnea, meaning that she is initiating breathing at a regular rate (A GOOD THING) but when she does it, something is blocking the air from actually getting to her lungs, an obvious BAD thing. An acceptable # of episodes is 2 or under. They MIGHT except 3 if she's keeping her SAT's up. But 4 or more are not acceptable under any circumstance. Annabelle had 9.

So, we are back on having sleeping oxygen regardless of her oxygen saturation at home until we can figure out what to do, although this fixes nothing... just helps minimize the damage by ensuring she keeps adequate O2 saturations.

Their first course of action will be to do a bronchoscopy. She had one done a LONG time ago when we were having trouble keeping her off the ventilator in the hospital, but that was November 2010. At the time, she was diagnosed with moderate left-sided bronchomalacia (basically floppy bronchial tubes) and they recommended a trach, which my husband and I (as well as her cardiology team) disagreed with, which I am SUPER glad of now.

In this new scope, they will check to see if the bronchomalacia is still an issue, ensure she hasn't developed tracheomalacia (floppy trachea), and will also check the size of her tonsils/adenoids.

Their HOPE is that it's just an issue of her tonsils/adenoids being enlarged, and that they can take them out (they will have ENT there and would do the surgery at the same time as the bronch if needed) and that will fix the problem.

Although surgery is one of the last things I want to think about at this point, the alternatives are NOT things I want to contemplate at this point. First of which, is an at-home CPAP machine for sleeping. Last of which is the "T" word again, which I've already said is NOT an option. She is breathing 96% of the time just fine. She is growing and almost walking and is super active. I believe the risk of infection and quality of life issues, as well as the fact that she will likely outgrow this in the near future, make the "T" word even ridiculous to bring up as any type of option, last or not.

All this to say... our May is shaping up to involve another surgery (date unknown, but he said it should be in the next few weeks.)

And did I mention that I have my sister's baby shower to plan that is on the 20th??
As well as my final proof edits due on my Sandwich book this month on the 21st??
And that my children have softball practice/games almost every single day of the week from now till the end of the month... sometimes two in the same night?????

It's a super good thing this Momma doesn't drink alcohol. I know some might say a glass of wine might help, but if my inhalation of Dr. Pepper and chocolate during times of stress are any indication... it wouldn't be a pretty picture at my house if I allowed myself even a small sip.

So, how the heck do I simplify this month?

That is a super good question that I don't have an answer to.

Because sometimes... I'm realizing that you just plain can't. Sometimes everything that is on your plate, NEEDS to be on your plate, and you just revert back my tride-and-true 24 hour window philosophy. Handle what comes on a day-to-day basis with the strength God gives you to handle it, and trust that God will take care of the rest.

Oh, and you also multi-task. I guarantee you that I will be seen at many a softball game with pages of my book in hand along with a wonderful red pen. I can scream "GO TEAM" at the same time as I cross out a misspelled word with the best of them:-)

I'm also going to be doing some massive delegating to my "team" this month. So children... be prepared. Change is a'comin.

And whenever Annabelle's surgery comes... well, everything else will be dropped because a Momma has to have her priorities!!!

And prayer. There will be a lot of prayer going on in this house!

*****

Radio Interview Update: It went okay... I think! You can listen to the podcast if you so desire here.... http://nicoleodell.com/choose-now-radio-parent-talk/ (the link is on the right-hand side)

A HUGE thanks to super awesome author and Super-Momma herself, Nicole O'Dell, for having me!!!

*****

Book Giveaway: THANKS to all those who commented to enter the drawing for Katie's book, Wildflowers from Winter.

The winner is......

Tammi T.!

Congratulations!

If you didn't win, you can get her super awesome book here or at your local bookstore! Tomorrow is her official "release" date! YEAH!

*****

For you local peeps, don't forget that Matt Hammitt (daddy to heart warrior Bowen and lead singer of Sanctus Real) will be in Franklin, TN tomorrow, May 8th from 11 to 1 signing his book, I Couldn't Love You More. A portion of the proceeds from the book go to his amazing foundation, Whole Hearts Foundation, that supports heart families and research for Congenital Heart Defects.

9 comments:

Debbie McMillin said...

Krista,
I read your blog often and am a fellow writer (in process). My husband was in the hospital in April and stayed a few nights before finally going home. I thought of you, and your life and how God is helping you through it. I pictured you as a taut rubber band, pulled to the max. No wonder, then, that as Annabelle is now at home, your rubber band life is trying to go back to normal, but still gets stretched. You have been through (and are going through) a LOT, and the rubber band will take some time to return to its same shape. Anyway, just wanted to say we're praying for you. I appreciate your honest words throughout your journey. Blessings to you and your family!

Krista Phillips said...

Thank you Debbie! The rubberband analogy is a very appropriate one!!!! I think my rubber band has a permanent new shape (which happens when you stretch something out super far for super long) but I'm believing that my new shape is for God's glory and is maybe.... a better one???

Katie Ganshert said...

Praying for you guys, Krista. This is me being totally flighty....but what is the "T" word?

Keli Gwyn said...

May the Lord be with you as you deal with all the things happening in your world this May. Sending hugs and virtual chocolate your way, Krista.

Krista Phillips said...

HA! Sorry... T is for Trach (i.e. hole in their throat to put breathing stuff through vs their mouth...)

The word is banned from our home, as it WILL NOT HAPPEN. It is also banned from doctors using it in my presence.

Tammi T. said...

Thanks so much for the book! It brought a smile to my face! Though I don't live near Franklin, I appreciate the reminder about Matt's book for children. I had forgotten about it and I do want to purchase it.

We have been praying for your family and will continue to do so. I know facing another surger isn't the ideal but if it corrects the problem it will be worth it. We'll be praying that it is simple enough and without complications. Though we have never met, your family is very dear to us.

Lots of Love and Prayers,
Philippians 1:6-11 and 4:4-9

Erin and Raygen said...

Hi Krista,
We will be praying for Annabelle. I just wanted to share with you that after the Norwood Raygen's vocal cords were paralized and she had to get the "T" word. She got it in May and by November she was able to have it removed. It was the hardest thing ever. We had to have nursing especially during the night and we had nursing 6 hours a day. The care and maintenace are huge. So stay strong with no "t" word.
I listened to your interview and I thought you rocked it!!
Erin

Krista Phillips said...

Erin... THANKS!

The T word for paralyzied vocal chords make me sad... Annabelle's were completely paralyzed after transplant, but she was able to breathe okay... not the greatest, but many times they come back fairly shortly.

The other thing is, having a "t" makes them ineligible for a heart transplant until they get it removed. If we had gone ahead with their recommendation... our story would ahve been a much different, most likely much sadder one.

That said, there are definite reasons to go the "t" route, and every family has to make the decision for themselves.

Angie said...

Sweet Annabelle, I will pray,pray,pray for a swollen tonsil!!!
And, I can't wait to listen to your interview. I have heard such good things about it! ;)
I hope that sometime this month you get a nice relaxing day, or afternoon, or hour at least!!
Love,
Angie