FAITH & fear

Now that all of the pre transplant "work up" and evaluation is complete, things have slowed down a bit. I hesitate to say it out loud, but it was almost boring for a bit yesterday. I don't know if boring is good or not. I certainly appreciate the lack of medical drama from Parson --but in the boring moments, my mind goes places that it should not.

I got a great reminder of where my mind needs to dwell in those boring moments. My dear friend gave me a plaque that says "LET YOUR FAITH BE BIGGER THAN YOUR FEAR".

In thinking about faith, I think a lot about a BIG faith that is mentioned so many times throughout scripture. A David & Goliath big... A Daniel in the lions den big... A Shadrach, Meshach, and Abednego big... A Moses big... Those fellas had to have been scared out of their minds in the midst of their circumstances. Definitely no shortage of fear in their stories. They certainly could have let their minds wander to the "boring", fearful places, but instead they held on to a BIG faith that carried them beyond their circumstances.

You know, there is no shortage of fear in my current circumstances. But the same BIG faith of David, Daniel, Shadrach, Meshach, Abednego and Moses is mine too. The fear is real & the faith is too. I can allow my mind to wander into boring fear, or I can claim BIG faith.

When I look around-- I have got a lot to be thankful for. I am not in a burning pit. A lion isn't gonna eat me for lunch. There are no burning bushes on my path. I do have a big giant to take down, but I have a BIG faith and confidence in God's plan.

The Dream Team

After 5 days in ICU, we transferred back to PCU (progressive care) last night. Parson is off most of the sedation drugs and is beginning to come back to "life" again. Her heart rate is much more stable & her breathing is improved also. I am expecting smiles to return anytime.

Last night was a good night & today has been a good day. It has been a while since I was able to say either of those phrases. Ahhh - feels so good.

Dr. Fidone, our pediatrician from Lufkin, popped in to check on PDiddy today and he and Dr. Mallory met for the first time. It was a Kodak moment and it made me so thankful to have "The Dream Team" all together in one place. I am considering getting a cardboard cutout of Dr. Fidone for the hospital room, because Par has been on her best behavior the last couple of times he has checked in. She has good days when he is around.

Rodney & Darby came this past weekend for a visit. Darby learned to blow bubbles with her bubblegum and has been practicing nonstop since. We went to Hermann park to ride paddle boats & eat snocones. It was a gorgeous day Saturday. Snocones + bubblegum + paddleboats = GOOD DAY!

Pic #1 - The Dream Team
Pic #2 - Darby with a snocone in Herman Park this past weekend
Pic #3 - Parson "brushing" her teeth earlier today

The List

Hurry up and wait.
Wait. Wait. Wait.

As of this morning, Insurance approved the transplant and Parson is officially on "THE LIST". Our waiting game has become official as we await new lungs from a donor. Donor lungs must match PDiddy in height/size requirements and blood type requirement. Some kiddos have waited one day for lungs, some have waited up to one year. The last kiddo here at Texas children's waited about 3 months. You just never know.

I just can't help but think of the fantastic passage in Isaiah that talks about waiting.

“Have you not known? Have you not heard? 
The Lord is the everlasting God, 
the Creator of the ends of the earth.
 He does not faint or grow weary;
 his understanding is unsearchable. He gives power to the faint,
 and to him who has no might he increases strength. Even youths shall faint and be weary,
 and young men shall fall exhausted; but they who wait for the Lord shall renew their strength;
 they shall mount up with wings like eagles; 
they shall run and not be weary; 
they shall walk and not faint.” Isaiah 40:28-31

These great words apply to our current circumstances on so many levels. The waiting...The weariness...But those are our human concerns. HE doesn't grow weary and HE increases strength. HE gives power to the faint.

My whole perspective has changed recently knowing that Par was headed for transplant. I have got a sick kiddo waiting for a transplant, but in order for that to take place, another mom is going to undergo amazing grief & sadness with the loss of her child. Please pray for their "Plan B" that will come in the grief of losing their child. I can't stop thinking about it. I also think about the whole harvest process about them going to get the donor lungs. They have gone to both coasts and far north to get organs. They actually send a team of specialists from Tx Children's to go and get the donor organs. The same God that is the creator of the ends of the earth (like the Isaiah passage says) knows when and where and if lungs are gonna be available. His understanding is unsearchable. Even when I don't understand, He does. The whole process absolutely blows my mind.

April is organ donation awareness month. So I want to make a plea for you to consider organ donation if you have not already. It is the ultimate unconditional gift that you could give someone that could never repay you in any way. Please also make sure you make it official and let your loved ones know about your wishes. Getcha a cool red "DONOR" heart on your drivers license - all the cool kids have it.

Well, I gotta run, I gotta happy dance to do.

Dance With the One Who Brought Ya

The Medical Review Board at Texas Children's met Wednesday and unanimously approved Parson to be listed for transplant. We signed the informed consent for transplant and completed the last blood work. The only thing we are waiting for is insurance approval of the transplant. Dr Mallory has written a letter of medical necessity to substantiate the need for transplant to our insurance company. The transplant coordinator hopes to have her "officially" listed Friday - or by Monday for sure.

In the meantime, we have reacquainted with our friends in the PICU. In order to keep Parson's heart rate down, the doctors have had to keep her pretty sedated. She has had a few rough nights, but today was a much better day.

This morning, Dr. Malory arrived around 5.30ish for "dance lessons" to tweak the vent settings to help Parson and her vent "get it together". He describes the relationship between patient and ventilator as one that is much like two dance partners that must be completely "in sync". Dancing With The Stars -ICU ventilator edition. He must've stayed at the bedside for three hours or more adjusting the settings until he was satisfied with their "dance". (On the final performance, Bruno & Carrie Ann both gave them perfect 10's, but Len said he saw a tiny lift.) Like they say, you gotta dance with the one who brought ya.

Thanks so much for the prayers, texts, FB comments, messages etc. Honestly, as Par's condition has changed and we have had the string of bad nights, I have had trouble keeping up with responding to each one - so I apologize. This momma has been busy this week doing the "transplant two step". Please know that you are loved and appreciated even if I don't get the chance to respond.

Stay tuned for the next episode of dancing. Hope you enjoyed the show...

Ain't nobody got time for dat

Count it all joy, my brethren, when you meet various trials, knowing that the testing of your faith produces endurance. (James 1:2–3)

A lot can change in 24 hours. We had quite a storm here last night - literally & figuratively.

I pulled myself together and decided that was enough of the water works -- "Ain't nobody got time for dat". We got bigger fish to fry.

Parson has had another rough day & night. Overnight, they transferred her back to PICU because of her increased work of breathing & high heart rate. After assessing her, Dr Mallory said he plans to have an expedited Medical Review Board vote to get Parson listed for transplant ASAP. He doesn't want to wait until next week after all. Insurance approval is in the works and I have been working with the transplant coordinator to get all necessary paperwork completed.

Please say a prayer that Parson is able to stay "well enough" for transplant. Pray for available lungs when the time is right. Pray that God's mighty hand moves in all of this.

And my God will meet all your needs according to his glorious riches in Christ Jesus. —Philippians 4:19

For our light and momentary troubles are achieving for us an eternal glory that far outweighs them all. —2 Corinthians 4:17

A Beautiful Mess

He who started this work in you will be faithful to complete it. - Phillipians 1:6

To start it all off, my Texas Rangers lost to the Astros last night - the Astros - on opening day - puhleeze! What a mess. If that wasn't enough, this morning was a zoo around here.

As soon as Par opened her eyes this morning, she started struggling to breathe. Shortly after, the new parade if residents, fellows & doctors began. Today is the first of the month, so everyone rotated off and there is a new team. Out with the old & in with the new - a chance to make new friends. Everyone came in one by one to assess Parson & introduce themselves -- she showed them all her tricks - high heart rate, increased work of breathing, diarrhea, sweating etc. What a mess.

For some reason I woke up a wreck today - just couldn't hold back the tears. Not good on a day when there are lots of new faces to meet. Then there was another knock on the door - it was a social worker to interview me about the transplant process. (What the heck???? I am not fit for anything today, most less a assessment to determine if I am "fit" to be the parent of a child heading for transplant.) Is this all an awful April Fools joke? I am the counselor, the one who asks the questions, the one who peers into other people's deepest hidden places of the heart. In spite of myself, I was able to answer all of the questions with minimal tears and we can check that little chore off of the list. What a mess.

Today, we learned that the Medical Review Board will not meet this week as originally planned. They moved the meeting to next Wednesday so that they can hear a few other cases in addition to Parson. This group will determine to "list" Parson for transplant or not. So we wait for God's perfect plan and His perfect timing.

Lately I don't seem to have words to describe how I feel, where I am - or even words for proper prayers. Amy Grant captured it for me in her song "Better Than A Hallelujah".

We pour out our miseries,
God just hears a melody
Beautiful the mess we are
Honest cries of breaking hearts
Are better than a hallelujah.

My mind races in the middle of the night. My mind races in the heat of the day. The devil is working overtime on my mind & heart. I long for the time when Parson isn't drenched in sweat, fighting for each breath she takes. I long for a day without mechanical ventilation. I long for day when we can be together as a family again. I long for the day when the devil will go pick on somebody else besides little ole me.

I am sure of this...

I am a beautiful mess.
I am a work in progress.
My tears are temporary.
The Rangers will win again.
I have got joy deep down in my heart.
He who started this work in ME will be faithful to complete it. - Phillipians 1:6

I am easily distracted, but The Father didn't start the good work and get distracted. He is faithful to complete it - in me. HE makes the mess of today - the mess of me - beautiful!

And if the devil doesn't like it, he can sit on a tack.

Stronger

I like to think of myself as an eternal optimist. There is always somebody that is in worse shape than me. And the sun is always gonna come up tomorrow. I keep telling myself that this whole Plan B is gonna make me stronger. Truth is... I don't want to be stronger. There I said it.

This week has been tough. Darby came home from school throwing up Tuesday. We met with the lung transplant surgeon Wednesday. Par had a terrible day Thursday and we can't get her off of the hospital ventilator. Rodney started throwing up Thursday afternoon. Now my Mom, Gee Gee is throwing up. Uncle!

Parson has made her opinion known without question this week. She is a strong, opinionated woman at 8 months of age. "And though she be but little, she is FIERCE." She doesn't like the LTV- home ventilator. After multiple attempts to switch her back over, she is not happy unless she is on the hospital ventilator. Her doc said it is like driving a new Mercedes as compared to an old Volkswagen bug. She likes the finer things in life. Unfortunately we cannot bring a hospital ventilator home. So, we are in ventilator limbo.

The meeting with the surgeon went well. He spelled out the whole transplant process & gave us oodles of statistics. He said it is a big decision for parents to make, but there is not a decision to make as far as we are concerned. New lungs provide her only chance. The transplant committee will meet Wednesday and after that meeting we will know what we are waiting on -- Waiting to be listed, or waiting on lungs. Either way waiting.

I shared a great post on FB yesterday from Pete Wilson. He seems to be my "go to" guy right now. He wrote a fantastic book called "Plan B" that I have drawn strength from and yesterday's blog post from him was fantastic. The post talked about Easter and the events surrounding Good Friday, Saturday and on to Easter Sunday. I am SO glad he posted it yesterday because The Lord knew I needed it today. If you didn't read it, scroll back to yesterday and give it a read. It is certainly worth your time. But I cannot say it any better, so I copied some of it from Pete. Here is the truth about Saturday...

~*~*~*~*~*~*~*~

Nobody would argue that Easter Sunday is a day of celebration. We celebrate that Jesus conquered death so that we can have life. It doesn't get any better than Easter Sunday.

But we don't hear a lot about Saturday do we? Saturday seems like a day when nothing is happening. In reality, it's a day of a whole lot questioning, doubting, wondering, and definitely waiting - a day of helplessness and hopelessness. It's a day when we begin to wonder if God is asleep at the wheel or simply powerless to do anything our about our current problems.

While we don't spend a lot of time talking about Saturday, I think so much of our life here on this earth is lived out feeling somewhat trapped in Saturday. I'm trying to get to a place in my life where I can embrace Saturday. I'm trying to get to a place where I can view it as a type of preparation for what I believe God might be doing in my life.

You may currently be in the midst of a horrible, out-of-control situation. You feel as if God is not there, that there's nothing that can be done.

But here is the message of the gospel for you while you're stuck in your helpless, hopeless Saturday life: God does his best work in hopeless situations.

We worship a God who specializes in resurrections. He specializes in hopeless situations. After all, at Easter, we celebrate the fact that he conquered death- the ultimate hopeless situation- so you could have life.

His followers were dejected and dismal and hopeless- and then Jesus rose from the dead. God did the impossible and in a matter of hours the disciples journeyed from hopeless to hope-filled; from powerless to powerful. They saw him risen and everything changed. The story of our salvation was born out of extraordinary uncertainty. But that's the way hope works.

And no, that doesn't take away your cancer.

That doesn't erase the bankruptcy you're in the midst of.

That doesn't heal your broken relationship.

That doesn't replace your shattered dream.

But it can remind you that while life is uncertain, God is not. While our power is limited, God is limitless. While our hope is fragile, God himself is hope.

Your world may feel chaotic, especially when you're stuck in a Saturday struggling hopelessly and waiting desperately.

But no doubt about it, God is still in control. And one way or another, Sunday will dawn.
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Yep, I am stuck in a Saturday- struggling hopelessly and waiting desperately saying that I don't want to get stronger. But a new day is dawning and it is gonna be Sunday! Easter SUNDAY!

It just doesn't get any better than Easter Sunday. My hope is fragile, but God himself is HOPE. Last time I checked, the tomb was empty. Brothers & sisters, That'll make you stronger!