Crazy Train Derailed

By popular demand - here is the juice detox review. 

Well, I think I must have gone to tinkle at least 72 times today. I didn't have a chance to have a nap as expected because I was walking back and forth to the bathroom all day. (The restroom is a ways away from us outside of the PICU.)  Alright - I realize that the tinkle talk is probably way too much information -so I apologize friends, but in my quest for fair and balanced reporting, I feel it is very important to give you the whole story. 

I have come to the conclusion that I don't like the strange taste of beets & ginger. I am not a big fan of Kale either. Right about the time I started to drink my lunch, Parson had a terrible tummy ache & got really upset. I could even hear the rumbly in her tumbly. She made REAL tears for the first time in her life.  Her tears made me have tears. She was even wincing and scrunching her face in a crying fashion -crying is something else she has never done (even though she can't make a crying sound). 

The lunch drink was gross - didn't even finish it all and chunked it. My baby was crying, my lunch drink was awful and I hadn't even had any caffeine.  At this point I'm rethinking the detox.  It's gonna have to be tears or detox for this Momma  - but not both.  The crazy train has definitely derailed. I am too much of a emotional eater -- Bring on the sweet tea, chocolate & French fries -- clean living is not for me.  

Parson is still having some tummy issues, but other than that she is doing good. She worked with physical therapy today and was able to sit up for a bit. She was more awake and alert than she has been in about a week. The good news is that she hasn't had to be paralyzed in over 48 hours. Woohooo. I claim that as a small victory. 

I'll take small victories over juice detox any day. :) People, they don't call it the crazy train for nuthin'!  Excuse me, because I'm getting off at the next stop. 

+*+*+*+*+*+*+*+*+*+*+*+*+*+*+*+*+*+

Here is the chunky money wiped out after her PT workout today... (Excuse the messed up hair, she just got done working out.)

PDiddy with Nurse Roy and Nurse Tiffany

Crazy Train

Ok friends, I have officially lost it. I am not one to try and fit in or follow the crowd, in fact I typically like to swim upstream most of the time, but I have lost complete control and don't know the person who is writing this blog entry -As I sit here drinking my cucumber infused water.

I don't even like cucumbers or water for that matter. I hate most vegetables. I love sweet tea and grilled cheese sandwiches. In fact, I think the last vegetable I ate was actually a fried green bean last week sometime. (That counts huh?) But somehow these crazy nurses convinced me to jump on the crazy train and do a juice detox. At 3:52 am this morning a nice fella delivered my handy dandy little pack of juices that are going to absolutely transform my life. Well, I drank the first for breakfast - a nice combination of pineapple, orange, carrot, & beet. And I am pleased to report that I didn't die yet. Now I am slowly sipping my cucumber infused water (I can have all of that I want today). In just a few minutes, I will enjoy my mid-morning snack - pineapple apple, orange carrot, grapefruit & grape juice.  

After my system is completely shocked with veggie/fruit overload, I will probably not even need to sleep tonight - and I am not gonna want to sleep because I am gonna feel like a million bucks - and be ten foot tall and bulletproof. I would love to blog on and on and tell you about the amazing benefits of juicing, but I gotta run out to the fridge and get my juice snack -- and take a nap because I can't keep my eyes open (there is no caffeine on the detox baby!). 

Good clean living. They say a change of pace is nice - right? 

Little Ones to Him Belong

 "Little ones to Him belong. They are weak but HE is strong."   I keep singing those words over and over in my head....

Parson has had a rough weekend. She is still having respiratory spells even with the large amounts of pain meds and sedation. When she gets out of sync with the ventilator, she fights and is unable to get the proper ventilation that she needs. As a result, she has become difficult to manage from a sedation and nursing standpoint.  They are having to paralyze her multiple times a day. I hate to see it, but it is encouraging to see her fight thru multiple heavy drugs.  It is like sunshine in the rain. 

The past few shifts, Parson has been assigned to "one to one" nursing where she is their only patient. I really hated to see that happen, because "one to one" is a milestone I really hoped we would not need- but it is a relief at the same time. As it is now, she is on 8 different narcotics and none seem to be providing the relief she needs because she has become so habituated to the drugs and still requires paralysis.  The critical care team has put in for a consult from the pain management team.  The weekend doc mentioned that they may recommend putting her through an intense "Betty Ford" type detox. Hopefully they can determine a workable plan that will allow Parson to be safe & comfortable.  

Little ones to Him belong, they are weak but HE is strong. 

Over the past week or so, if I am honest with myself and all you friends out there in the blogosphere, I have to admit that I have been in a real funk. Extended time in the ICU in a children's hospital begins to wear ya down after a little while.  The daily increase in narcotic meds for PDiddy is becoming a worry as well.  And to top it all off, my Clinical Strength antiperspirant/deodorant is beginning to lose it's magic. Darn it, that stuff was supposed to be 4x stronger under pressure. Guess it is time to dig deep in the ol'deodorant drawer - Maybe it is time to return to the trusty ol' "Tropical Paradise".  

Even in the midst of my funk, God has been so faithful to remind me of His goodness.  I have received countless special texts from friends, many words of encouragement, donations, hugs from family, smiles from strangers - and even a special delivery of cupcakes and an edible fruit arrangement!  You people really know how to carry your friend through the funk. 

But I trust in your unfailing love; my heart rejoices in your salvation.  I will sing the Lord's praise for he has been good to me. - Psalm 13:5-6 

PDiddy's Peeps at The Children's Clinic of Lufkin. 

Highlights from Darby's "selfie" photo shoot on my phone... Boy, does this kid crack me up. 

SuperGirl ...

The Blessing

After 128 days at Texas Children's Hospital I can confidently tell you that I have discovered that the blessing is in the waiting. 

With each new shift change, I continue to meet amazing, powerful, strong and committed folks who take care of my child (and me).  The people here are second to none. 

Whether it has been performing a life saving measure to keep Parson alive or bringing me a piece of homemade cake from home that their momma made (with a glass of milk) - my friends here really make this journey so much more bearable. 

Now, that being said, I am tired of waiting and I am SO ready to "get the show on the road". Honestly, it is quite impressive/embarrassing how "bipolar" the waiting game has proven to be for me.  It would really be amazing if someone could "get into my head" and see just how quickly my emotions swing from peaceful and patient one moment, to anxious and impatient only two seconds later.  

I find great comfort in the story of Abraham in Hebrews 6. God made him a promise and made good on that promise in His perfect time. I am pretty sure that Abraham probably got tired of waiting and was a bit "bipolar" in his confidence during the waiting.  In the scripture there is a full assurance in the end, so in the meantime I am reminded to be an imitator of those that have gone before me (vs 12).  Abraham's story encourages me to hold fast to the hope set before me.

Abraham was a boss at the waiting game. God promised him green valleys and flowing rivers, but Abraham had to wait awhile for the promises to be revealed. Hmmm- I'm feeling a lot like that guy. Certainly seems like God revealed himself to Abraham while he was on the journey rather than a big reveal at the final destination. 

The last 11 months certainly make me confident that life is so much more about the journey rather than the destination.  Just as He did for Abraham, God will show me the unchangeable character of His purpose - in His time. While I wait, He will be the anchor of my soul (vs 19). 

Today I am so thankful for the blessing of the beautiful people that I have met all along this waiting journey so far. Because when it is all said and done, I know that this journey is about SO much more than new lungs for Parson. 

"And so it was that she, having waited long and endured patiently, realized and obtained what God had promised" - Hebrews 6:15 (Jenn's New Living translation)

The Parsonage

Parson really knows how to keep things interesting. She got worse over the weekend before taking a turn for the better. Initially when they removed her paralytic IV drip, she protested. She required 7 individual doses of the vecuronium to make it thru the night.  She also pulled out her GButton and it had to be replaced. She settled down for a while (only to refuel) and later in the afternoon, popped a second GButton. Mercy. (Now bear in mind she is still on a "big slug" of 6 different narcotics while bringing down the house.) Her doctors were just shaking their heads. They agree with the rest of us - She is FIERCE!  Dr. Mallory said today during rounds that they should rename Parson's room - "The Parsonage". Quite Clever. 

Last night was a calm night and today has been calm and peaceful as well.  Her heart rate has been really controlled - lower than it has ever been. As a result, the docs have been able to wean some of the sedatives and her vent rate as well. 

No big excitement around here- we will certainly take good days until new lungs become available.  The good days are a gift (even if it is better living through pharmacology.) 

Every good and perfect gift is from above, coming down from the Father of the heavenly lights, who does not change like shifting shadows. - James 1:17

Hey kids - I see some new lungs in my future...

Dr. Darby has got things covered ...

Love Ya Blue

My heart

Parson playing with the Funky Chicken

 

Grace for What Is.

I saw a cross in the hospital gift shop that had a great saying.... "God does not give us grace for what if. He gives us grace for what is."  

"My grace is sufficient for you, for my power is made perfect in weakness." - 2 Corinthians 12:9

After a few good days, Parson took a nosedive on Friday and she was transferred back to PICU on Friday night. She has had repeated episodes of respiratory distress with tachycardia (high heart rate) and increased work of breathing. She "clamps down" and she moves no air in her lungs. Not fun. Over the course of the last few days, the docs were having to use the "rescue" plan meds more often and she was not responding. The bottom line is that she fights the vent and will not allow it to do the work for her.  In PICU, they are able to give multiple IV meds that take Parson out of the equation. She receives IV fentanyl, versed & vecuronium. In addition they added precedex this go around.  These meds paralyze & sedate her so that the vent can work properly. In addition to the IV meds, Par receives methadone, Ativan, and clonidine to manage her respiratory distress.  As of yesterday morning, Par is doing much better. (Dr. Fidone came for a visit, so of course Diddy was having a good day.) Overnight, they weaned the paralytic (vecuronium) to see if she is able to manage without it. If she begins to fight the vent, she will have to be paralyzed again. The more meds she gets, the more meds she requires. Over the last week, they have had to up the dose on several meds as she has become more tolerant and resistant. The docs were amazed that she was moving and wiggling on such a "big slug" (doc's description) of paralytic/meds. 

This is PDiddy's 9am meds this morning... 9 meds going into her GButton 

PDiddy's IV med story ....

This is the IV "intersection" where all the pumps transition together into her picc line....

Each time this week when they pushed more meds or added another IV pump,  I reminded myself that His grace is sufficient.  Amazing Grace. 

I have to give a shout out to PDiddy's Posse - You girls know how to make the best of a hospital stay. Thanks to you girls -- we smell good, look good and feel good!  We feel the love - (like a big ole hug each time I think of you girls.) Thanks for the special delivery and the cute PDiddy Posse cups - that's makes for some great lemonade! 

Speaking of lemonade... The "curly headed tornado" and my baby daddy will be here to visit us soon. Ahhhh. 

I am SO thankful for His grace - it is enough. 

Lemonade

Once upon a time there was a girl who life handed some lemons...

Back in January when I began writing this blog (as an outlet to process my crazy life) I told myself that I would do my best to be transparent and real. To document the good, the bad & the ugly. Well, over the past few days I have been mulling this latest blog post over in my mind. I have written it over & over a thousand times since this past Sunday morning. 

I woke up Sunday morning from my cozy ICU waiting room recliner, went to brush my teeth in the community bathroom, ran in to check on Par in ICU real quick, then wanted to get a load of laundry on to wash before everyone else woke up. (Hopefully no one else was gonna be washing on Mother's Day.) I had to go get the dirty clothes out of my minivan that was parked in the parking garage. When I got out to the garage, I discovered that my minivan had been broken in to. Ugh. I mean really?!?!  What kind of a sorry dog breaks in to a minivan in a hospital parking garage and steals stuff? Talk about kicking somebody while they are down. My mind rushes to think "scum of the earth", "lowest of low", and "karma is gonna get you". Needless to say, the police report etc. slowed down my race to the washing machine.  Eventually I got my clothes washed, but it has taken me a few days to process the most recent lemon that life handed me - (that sorry sucker left a real sour taste in my mouth).

Consider it pure joy, my brothers and sisters, whenever you face trials of many kinds, because you know that the testing of your faith produces perseverance. - James 1:2-3

Trust me friends, when I woke up Sunday morning, perseverance was the last thing on my mind. I think the combination of events just really came together to really "work" on me. Since then, I have had to really practice some good self-talk to get myself to make lemonade and consider things as pure joy.  

Although Sunday really sucked (pun intended), Monday brought a welcome change of pace. Parson had proven herself over the weekend, so we unlocked the wheels on the crib and went for a field trip. We moved back up to PCU and have been enjoying the good life ever since. Momma gets to "room in" with PDiddy and enjoy the daybed & shower. Tuesday was the BEST day Parson has had since before Easter.  She had a great workout with physical  therapy and they ordered a high chair for her to sit up --She sat up for over 2 hours! All her fans were so glad to see her and see her sitting up. Today started out a little rough before she even woke up, but the docs ordered some extra meds to head it off. After a rough morning, this afternoon has been so much better. Today she sat up in the high chair at two different times.  It had been a good day. I needed that.

People, this is how I see it.  When life hands you lemons, you have got two choices... Suck on the lemons or MAKE LEMONADE!  After another 7 days in ICU and my minivan being broken in to - I really, really, REALLY wanted to suck on the lemons. My kiddo is sick, my family is split, my car was robbed, I have been living in a hospital since February 4th and one of my chickens died (shhhh - Darby hasn't figured that out yet).  Yeah, Sunday really sucked, but Monday, Tuesday & Wednesday have made me feel like a ROCKSTAR. My girl is beginning to smile, she is sitting up & she is feeling better.  All that other junk doesn't matter. 

Pure joy. Pour the lemonade. Cheers. 

Can't Stop Me Now

All week has been a back and forth ride on the roller coaster.  Parson just hasn't been happy. The doctors have worked to find the perfect combination of interventions to help alleviate the spells of respiratory distress. Still in PICU for now. Parson's docs told her yesterday that she was gonna need  to "prove" herself before they allow us to transfer back up to PCU.  Yesterday was a crummy day as Parson required a great deal of extra IV sedatives to keep her comfortable. Even with all of the meds on board, she does not respond in the typical fashion. Most kiddos would be out like a light, but PDiddy seems to keep going strong. Little by little we are ruling out what doesn't work. After doubling a dose of her meds late yesterday, she had a great night and is smiling and bopping today (for the first time in a good while). I will take sweet smiles any day!  

After all of our time here, I am still amazed at the personal touch that we have received.  Our nurses and doctors are second to none. Everyone from social workers, to the child life specialists, RT, PT, OT and our transplant team have been so very good to us.  Child Life made the sweetest Mother's Day card for me with Par's help (See pic below) - sweet sweet feet. 

In the latest music news... I downloaded a great new song - Rod Stewart "Can't Stop Me Now".  (That rascal just keeps on turning out great new music - plus he has some cool doo wop girls.)  I have deemed it the PDiddy theme song...  This one goes out on a long distance dedication from PDiddy to all of you...

They can't stop me now, the world is waiting, It's my turn to stand out in the crowd.  They can't stop me now, the tide is turning, I'm gonna make you proud. So proud. So proud.  It was rough and it was tough but I couldn't get enough of this rhythm and blues I craved.....I will climb this mountain with this God given gift if it's the last thing that I do....They can't stop me now, The world is waiting. 

Thanks for the faith. Thanks for patience. Thanks for the helping hand. Thanks for the love. Thanks for the guidance...  Cause they can't stop me now, The world is waiting. 

One day soon, Parson is gonna bust out of this hospital and get to know all of you who have been faithful friends along this journey.  I would be lying if I said I wasn't tired of waiting for things to look up for little Parson. This has been quite a journey so far. She is such a fierce little fighter. On the days when I am weary, I put on my happy face, cancel the pity party and join PDiddy in fighter mode. Though she be but little, she is fierce. Soon she will receive her new angel lungs that will allow her to meet all of her wonderful fan club ... because we know the world is waiting. 

My Mother's Day has been amazing. A corsage, mother daughter "medicures", perfume, new shoes, chocolate covered strawberries, Pappacito's, and all the family in one place.  That is a LOT of goodness for one weekend!!  A BIG HUGE thanks goes out to my Mom for staying with Parson while I went out and enjoyed my day. Boy did that feel good. You are the best - I love you Momma. 

Par's Mothers Day Card

My heart...

Darby putting Lip Gloss on PDiddy

Darby's first "Medicure" 

Pink & Blue - Darby & Mom "Medicures"

Smile. 

Parson got a "medicure" too.

Purple Power!

Par now has a cape & mask to go with her super hero status... (Cutest thing I have ever seen) 

Hello Monday. Turn It Up.

Parson had a fantastic night last night - (translation....no extra meds or interventions needed to make it through the night. )

Bam. Then HELLO MONDAY! Par's
Day shift nurse arrived and checked her vitals. Fever. Ugh. My worst fear while we wait. (sigh) I live in a constant state of fear of infection. So docs ordered a viral panel & blood cultures. This meant that I had to call in the "big guns" and break out the work day playlist. I didn't have any other choice. (Remember back a few months ago, I told you people that music moves me.)

First, a little "Whom Shall I Fear - Angel Armies" from Chris Tomlin. (Had to turn it up half way thru). Next a little "Redeemed" by Big Daddy Weave. (Turned it up again.) Ah yes, can't forget "Miracle" by Third Day. (This one seemed especially good given today's new fever. I certainly could use a miracle TODAY.) I chased those with "For Once in My Life" by Sammy Davis Jr. and "Just the Way you Are" and "Treasure" by Bruno Mars. Ahhh. I'm feeling better already :-) All that good music inspired me to make a new playlist - I named it "Good Music for a Good Day". Creating the new playlist kept me busy for the next hour or so while Parson slept.

She was very happy while she rested, but boy oh boy, when she woke up she came alive. Heart rate began to climb, peak pressures were rising, and her SATs began to drop. After several interventions we took the "show on the road" again. We are back down in the PICU where the plan is to X-ray, sedate & paralyze to decrease her work of breathing and heart rate.

When you say your prayers tonight, please say a prayer for PDiddy. As for her momma, I think it is time to TURN UP the music. Time for more "Good Music for a Good Day". I'm gonna start by turning up "Believe" by Cher -- "Cause I know that I'll get through this. Cause I know that I am strong." Sing it sister.

Parson Blue Day !!!

Parson Blue Day was absolutely AHHHHH - MAZING! My heart is so full that it made my eyes leak. Just when I would pull it together again, you guys would overwhelm me with more pictures offering love & support. (My eyes are leaking again as I type this.)

Parson has done much better over the past few days in ICU, so we moved back up to PCU yesterday where I get to "room-in" with her. One of the nurses told me that she thought that I needed my own dedicated cart for moving since Parson has earned so many "frequent flyer" miles. I am beginning to think she is on to something. The docs have tweaked her meds a bit so here's hoping we can keep her heart rate and increased work of breathing better under control while we wait for her new lungs.

There are peace, love & PB Tshirts EVERYWHERE. (Kree even got one.) The Grimy Gals and Tuff Mudders even represented Parson Blue this weekend in Galveston at the Gritty Goddess race. We have received love and prayers from sunny California, Hawaii, Louisville and all the way from France -- but none of those were as sweet as those from HOME - my Jasper home. You guys are THE BEST. Thanks so much for the LOVE.

Big HUGE thanks go out to the YLSET- Youth Leadership Southeast Texas- students (pictured below) from Jasper High School who made Parson Blue Day happen. Our family is so grateful to these students, their adult sponsors & the TShirt sponsors listed below. These folks are leaders in my book!

YLSET Members:
- Jacy Cordova - team leader
- Kurstin Buckmaster
- Morgan Denovich
- Katherine Padgett

TShirt Sponsors:
- Elijah's Cafe
- Weaver Brothers Motor Company
- First National Bank
- James E Jeansonne Financial Planner
- Lakeway Tire

Adult Sponsors:
- Debbie Cordova
- Donna McDonald
- Stacy Gillis

Warrior / Worrier

Warrior. (Say it out loud.)
Worrier. (Say it out loud.)

I think they are kinda/sorta Homophones - sound alike but have different meanings.
I was having a conversation with Rodney and used the term above and he stopped me mid sentence and said "Are you saying warrior or worrier?"

Well, lately I am not really sure which one I am. I have my valiant warrior moments where I sit tall upon my stallion and ride bravely through battle, but can quickly change into worrier mode where I rush quickly in and out of the day's events with many thoughts of inadequacy. Crazy how quickly the transformation between the two can actually happen.

I learned a lot about psychology when studying for my masters degree in counseling. I learned about "stinking thinking", reframing, and lots of other terms that are used to describe the storm of emotions. Learning and applying it to others is one thing, but living it is another. What I do know is this - It is exhausting to move between the warrior and worrier modes.

I woke up this morning thinking it would be a great day for surgery. When we are sitting on "GO" in the waiting game, it puts the control freak like me on edge. I AM ready. AM I ready? Yes, I AM ready. Really? This sort of internal dialogue is what makes the super hero in me spin between warrior and worrier modes at lightening speed. Bring on the new lungs. What if her body rejects them? I CAN do this. CAN I do this?

“Be strong and courageous ... The Lord himself goes before you and will be with you; he will never leave you nor forsake you. Do not be afraid; do not be discouraged.” - Deuteronomy 31:7-8

One thing is for sure - I may be lost in the emotions of today, spinning between warrior and worrier - but Parson hasn't wavered. Yesterday she cut a top tooth and she has been such a good sport in spite of having the teething yuckies. She is a WARRIOR! It is absolutely no wonder why so many of you are rooting for her. Soon she should breathe without struggle for the first time in her little life. So tomorrow, I will proudly pull on my PB TShirt warrior outfit, shake off the "stinkin thinkin" and celebrate Parson Blue Day. She is the best little super hero I know.