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.
~*~*~*~*~*~*~*~

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!

Rollercoaster

I have always enjoyed roller coasters. Evidently Parson does too - apparently she likes them so much that she bought a season pass.

On Monday of last week, Parson was released and we were able to go home. Since then, she has had a really rough time. Wednesday night was not a good night and Thursday morning began the same way. On Thursday morning, I made a call to Dr. Mallory and he said for us to head back to Texas Children's. PDiddy's fan club was glad to welcome her back from her short trip away.

Whee. Up & down. Down & up. First night in PICU, then back to PCU for a few days. Parson spiked a high fever and had a high heart rate over two days so they moved us back to ICU yesterday. Now the fever is gone & heart rate has returned to normal and we have moved back to PCU. The doc just came to tell me that a blood culture has shown bacterial growth, so we know the source of the fever. Bless her heart she is still feeling pretty crummy, but she is a trooper.

We celebrated Darby's 6th birthday this weekend. "Super Dad" worked overtime to make sure things were as close to perfect as possible. After celebrating at Chuck E Cheese, they headed to Houston to celebrate with us. It wasn't the ideal situation, but worked out just fine.

Today we began the "full transplant evaluation process" for Parson. Lots of blood work, tests and meetings this week. These are all parts of the process that will be presented before a committee that will determine if Parson is ready to be "listed" for transplant. The transplant committee will meet on April 4. Dr Mallory is hoping to have everything "ready to go" for the meeting April 4th.

Yea, roller coasters are alot of fun - I absolutely LOVE the thrill - but lately it has been more like the "runaway mine train" or "river of no return". Blue spells, multiple ambulance trips, birthdays away from home, unexplained blood infections, and transplant talk -- I am once again smack dab in the middle of Plan B. Friends - it certainly isn't comfortable for this control freak, because I have never been here before. This self professed "fixer" can't fix any of this.

Thankfully, my savior understands my hard-headed, control freak, fixer tendencies and is right here in the midst of Plan B.

"The Lord is good, a Strength and Stronghold in the day of trouble; He knows (recognizes, has knowledge of, and understands) those who take refuge and trust in Him." Nahum 1:7 (AMP)

“The steadfast of mind You will keep in perfect peace, Because he trusts in You. Isaiah 26:3

Plan B is definitely revealing who I really am. I am so thankful to have a Savior by whom I was fearfully & wonderfully made --character flaws, personality warts and all. The Lord is good! A strength and stronghold in the day of trouble! He understands me and provides me with perfect peace. He and I had a long talk today and He reminded me that this is only Plan B for me - this is His Plan A and He has got this under control. I have buckled my seat belt and plan to enjoy the roller coaster ride. All clear.

Kinda like Skydiving

Honestly it reminded me of skydiving. We didn't think about it - we just did it. Sure, we thought we knew what to expect, but we just jumped in and did it - and didn't even give it a second thought. (Didn't have a chance to get butterflies or queasy.) Then, once it was all said and done - we gave each other a big ole HIGH FIVE!

Yea, we did go skydiving about 7 years ago, but this time I am talking about changing out Parson's trach for the first time yesterday. Just like when we went skydiving, Rodney went first, then I followed. We did AWESOME!

Yesterday was a whirlwind - three different classes followed by the big "end-of-course exam" (the actual trach change exercise). Rodney and I both received an "A" on the exercise and Parson got an "A+" because she was a great sport and let both of us have a turn. Then we began the 24 hour "room in" where we were to be 100% responsible for Parson without nurses help. We had to initiate all of her feeds, respond to alarms, administer all her meds & handle her ventilation equipment. WOOHOO- PARTY IN ROOM 10 !!!

While the trach change was a EPIC success, the "room in" was another story- EPIC FAIL! Long story and even longer night. We ended up having more attention than ever. Seems like if it could go wrong - it did. Par's trach was leaking air around it and she was talking/blabbing around it. (It was really cute/funny, but caused improper ventilation.) Then the ventilator kept alarming and powering off for no reason. (This should NEVER happen.) We switched to 3 different vents in the night. We finally decided that we had a power/electrical problem in the room. In the midst of the chaos, Par desat'ed to 19 (should be around 90-100), turned a lovely shade of "Parson Blue" and had a spell -- we had to bag her and breathe for her. So much for "rooming in"- we had more company than any other time -- but glad the problems happened while we were still in the hospital. We changed vents, electrical plugs and eventually changed rooms today. The new room has a better view & a much better shower.

Things are going fine today, but definitely hung over from the party last night in rm 10! Here's hoping for a better night tonight. The 24 hour "room in" is over and now we are just held captive until at least Monday. Here's hoping that Parson does not have any more episodes of acute desaturation, because Dr. Mallory said that could keep us here longer. Fingers crossed.

I have to admit - there was a HUGE rush when we went skydiving and we felt the same way yesterday - nothing like conquering something new. As Uncle Carter used to say, "Ain't no hill for a stepper."

Smiles and Snaggletooth

Busy. Busy. Busy. This trach boot camp stuff is no joke. They took away my cell phone & communication with the outside world so that is why I haven't made a blog post in a while. Ok just kidding-- but it has been really busy. We have multiple classes and trainings each day while we are also participating in the day to day care for Parson. Lots to learn in order for us to show proficiency to be able to bring her home soon. So exciting.

After a very, very long 13 days, Parson's smile finally returned. Whew - that was just what the doctor ordered (literally). The folks around here have made funny faces, danced in and out of her room, talked like Donald Duck and tried most anything to try to get her to smile. One of the critical care residents even busted out an amazing version of "ABC 123" by the Jackson 5. Made me smile, but not PDiddy. None of the antics produced any smiles, but once Daddy got here the smiles returned - for Parson (and me too.) She has made great strides in weaning her vent settings down to positive pressure (cpap), so hopefully we can work out the kinks before the weekend.

While Parson is working on cutting new teeth, Darby is losing them just as fast. She pulled her second tooth this past weekend at a dirty gas station in Huntsville, Texas. She is having a BLAST this week - her spring break extravaganza is split between cousins in Centerville and McKinney. Good times.

I am SO very thankful for our family and friends who have pitched in to help is in so many ways. Whether it has been to help us with Darby, feed our animals, fix things around our house, juggle cars to/from the hospital, make hospital visits, meeting the medical supply folks, or delivering meals & goodies to the hospital -- there is no way we could have made it without you. THANK YOU. You are loved <3

We are talking about coming home soon - so that makes all of us smile. :)

Country Living

Good news.... We got the plumbing/poop issues resolved and got evicted from ICU last night. We are back in the progressive care unit where we began trach "boot camp" today. They have slowly resumed feeds through her GTube and decreased her IV fluids. They have also begun to wean her ventilator settings as well.

Today has been a big day. Parson has slowly started to come back to life. She has been really dazed & confused since Monday's surgery. Today she finally realized that her hands/arms are connected to her body again. She has also resumed with the various therapies. We saw our friends from occupational and physical therapies today. They got her sitting up & got her dressed. I think she is feeling like a new woman. She has begun to reach & grasp and kick her legs once again :) She has been very serious in her temperament with no smiles so far -- but I know the smiles are coming soon.

I'm learning about kangaroo pumps, suction catheters, tumble form chairs and so much more. I got a big notebook to study and ask questions about. Next week we will go to trach education classes, trach CPR classes and have our "on the job training" in preparation to graduate so that we can come home and enjoy some good country living - where things make more sense.

Speaking of country living .... I am COMPLETELY overwhelmed with the outpouring of support that our community has shown for Parson Blue and our family. Many thanks to those involved in today's TEAM PARSON Chili Cook Off and Auction. I heard there was some really great chili. Thanks to those who organized the event, those that cooked chili and desserts, and to those that donated auction items. We appreciate and love you all. I am so proud to call Jasper, Texas my home.

Even Dr. Mallory said during rounds this morning that everyone would do better with "some good country living."

Below is a before/after physical therapy pic....

The Poop

Ok - who wants the Poop on Parson?
If you don't want the dirty details - you may need to pass on today's blog post.

So PDiddy had a Upper GI a week ago in preparation for her first surgery. During that test they gave her barium - the barium is still hanging around causing problems. Diddy hasn't pooped since last Thursday. The docs have given colace, milk of magnesia, miralax and glycerin suppositories to try and get things moving. We have been working on poop production for 3 full days. Diddy desperately needed to Doodie! Last night it became a HUGE issue. She spiked a fever and her belly was HUGE and bright red & very tight. After two enemas and 3 suppositories she finally pooped! (Remember- I warned you to skip the post if you didn't want the details :) ) There is definitely more poop to come, but it was a start. Once the belly issues are resolved, she can start with some pedialite in her GButton/tube and then progress from there. But for now the surgeon has the pedialite on hold. Physical therapy came and worked with Par today. They sat her up for the first time since surgery and hopefully that will be helpful to keep things moving. (Picture attached is Par doing her workout with her Physical Therapy friends.)

The poop back up is holding up any forward progress. Once things get moving, they will begin to wean her ventilator settings, begin to give her formula, begin the trach education and move us out of ICU back to progressive care.

Last night was a really long night while on poop watch. Somewhere in the wee hours I went to my chair in the ICU waiting area for a quick nap between enemas and the "chorus of snorers" was already in full force. There were four snorers, a snorter and a whistler too- all kinds were represented last night. Needless to say the nap didn't work out, but today has been a much better day and I keep reminding myself that "this too shall pass." (Pun intended).

I am amazed!

Whew - Parson's surgery went well and she has just returned to the ICU. Dr. Cass was able to do all three procedures laparoscopically. Today she had a fundoplication where they bring up and secure a portion of her stomach around the esophagus. This is to prevent reflux and protect her future transplanted lungs against any reflux as well. She also had a gastrostomy where she got a g tube/g button (feeding tube). The final procedure was a last minute "bonus" to repair an abdominal hernia that she has had since birth. The doctor did all that in her little body through 4 tiny holes. AMAZING! He even gave me pictures after the surgery. Actually, Dr. Cass frequently performs fetal surgeries where they take the baby out of the Mother's uterus and complete the surgery- then put the baby back -- Absolutely amazing when I think about it.

"Give thanks to the Lord, for he is good; his love endures forever". -- Psalm 107:1

I am so thankful for skilled doctors and steady, trained hands. I am thankful for strong family and friends. I am thankful for unending prayers for Parson. I am thankful for angel armies. I am so thankful to have the surgeries behind us.

Now we begin the recovery process & trach education in preparation to come home. I have tried not to think about home much - but I just can't help myself. I miss life on River Ridge Road - Things just make more sense there.

Wild Woman

It has been a pretty quiet weekend around here. But I learned last night that "quiet" "boring" and "slow" are bad words that they do not use around here. The nurses consider those to be dirty words. We are at the end of a hall in ICU and everyone else moved out yesterday so it has been really quiet. The medical team has kept Par completely sedated since Thursday's surgery so that the tracheostomy may heal properly. Gradually they have had to increase the amount of drugs because she is waking up and is a "wild woman" as the nurses say. They have had to restrain her arms to her legs so that she doesn't pull anything. She spiked a fever yesterday so they began a broad spectrum antibiotic to treat for any infection. Test results and cultures are still pending.

Parson has had lots of visitors this weekend. Aunts, uncles, cousins, grandparents, friends, and her favorite doctor. Thanks to the visitors, I even snuck away from the hospital and enjoyed dinner with Darby yesterday. They had the best mariachi band at Pappacito's and we had a ball. Standing on your chair while shaking maracas makes everybody happy, happy, happy! And as our friend Chuy would say " We owned that joint!" ... Boy- I needed that!

It really is a small world. This hospital trip has confirmed that to me several different times. This morning Kathleen the physician's assistant was examining Par and asked me if Jasper was anywhere close to Hemphill. Hemphill- are you kidding me? I was amazed. Her grandfather was a physician in Hemphill and his office was above the feed store. The in another small world encounter, Dr. Mallory went to a wedding yesterday and sat at a table with a lady from Jasper - but he could not remember her name.

As of now, Parson is still on the surgery schedule for tomorrow to receive her GTube and fundoplication. I am hoping the fever stays down and does not delay surgery. For now, I am practicing being still while I can.

"The Lord will fight for you; you need only to be still.” - Exodus 14:14

Things are gonna get really busy just as soon as they let Parson wake up. I can't wait!