Timeline of a Transplant

Thursday 6:15am

Dr Mallory was waiting when I got to Parson's bedside in the PICU. He gave the fantastic news that we have a very good offer for Parson's lungs.  Most of the day was spent making pre surgery preparations - paperwork, consents, pre surgery meds etc. Meanwhile behind the scenes, the transplant team worked tirelessly to coordinate surgeons & OR times here at TCH and the donor hospital. The transplant was scheduled for 3pm, then it was 6pm, then it was 11pm - and then it was off. 

Thursday 10:38pm

Coordinator just called to let us know that because of the storm, the transplant is on hold until inclement weather clears. They are unable to fly to get the donor lungs. Dr. Mallory and Dr. Heinle will meet in the morning to make a determination if the donor lungs are still viable.  

Friday 3:49 am

I prayed until I fell asleep. I woke praying again. Just couldn't sleep so I am back in  PICU with Parson. Now I wait until we learn more in the morning. Sleep eludes me. Praying. 

Friday 6:30am 

As my faith wavered, the phone rang with  fantastic news. We received word that the transplant is a GO!  The surgeon should be in the air within the hour to retrieve the donor lungs.  God certainly stretched our faith in making us wait a bit longer, but He confirmed that things work so much better in his perfect timing. Not only were the lungs still viable after the significant weather delay, but the blood gases had actually improved overnight!  That doesn't usually happen. Wow- it is amazing how He works when we get outta the way. 

Friday 11:46am

Anesthesia came to administer pre surgery meds/sedation. Parson didn't go down without a fight as they confirmed that she would prove a challenge to sedate. We unlocked the brakes on Par's crib and rolled up to the 18th floor where we kissed her goodbye and they rolled her into the OR.  Now we settle in for the long wait. The first few hours will be used to place lines etc.  Hoping the next update confirms a great "visualization" on the donor lungs. 

Friday 2:19pm

Erin, transplant coordinator, called to confirm that the donor lungs looked great on visualization. It is GO time!  This isreally  gonna happen. The next update will come from the OR staff. They should let us know when the lungs arrive in the operating room. 

(This is where I went into a Blog Fog and started posting updates to Facebook and didn't transfer them here.  I had great intentions -- Sorry - please friend me on FB if you want to put the pieces together. [Jennifer Sheffield Herrington] I will recreate the timeline just as soon as I get tired of watching Parson take big, huge, DEEP breaths!) 

The past few days have been so surreal. Absolutely unbelievable. I am SO AMAZED that God saw fit to bless Parson with new lungs. I am immensely grateful to the donor family who chose to provide LIFE. It is a gift we will never be able to repay.  I have tried to come up with the words to accurately capture how I feel, but I just keep coming up empty.   I have said this over & over the past few days...it says it best....

" Every good and perfect gift is from above, coming down from the Father ... " - James 1:17 

 Parson's New Lungs

Old lungs/New Lungs

Dr. Mallory & Dr. Melikoff, Lung Transplant physicians

Dr. Mom Listening to the new lungs....

Mom & Dad give the new lungs Two thumbs up! 

This is the Day?!?!?!

The LORD has done it this very day; let us rejoice today and be glad. - Psalm 118:24

We have the potential of a VERY good offer for lungs. Everything looks great so far for the transplant. The plan right now is to head to the operating room around 6ish this evening. (Of course all of that is still tentative.) The transplant surgeon here would like Parson to go to the operating room around the same time as the donor. The surgeon from here will go to recover the donor lungs at the donor hospital. Once the donor lungs are "good" on visualization, they will begin surgery on Parson. 

I just can't believe the rush of emotions surrounding today. Today is the day!  Parson will get her second chance at life. The miracle we have hoped and prayed for is here. After a really tough weekend and week, she will get her new angel lungs. 

Who are they coming from? Where are they coming from? What are the circumstances? My best day ever, is their worst day ever. 

Whew. I am absolutely exhausted from the swirl of emotions. In my anxiousness,  I keep going back to read a precious prayer I received via text message this morning. I don't even know the person who wrote it, it is from a friend of a friend. (Thank you KariAnn Lessner for this beautiful prayer.)

Lord, I lift sweet Parson to you today. We ask that this be THE match, the perfect fit. One that you ordained and saw fit to complete in her sweet little body TODAY. God give us eyes to see and ears to hear your message of providence in this story. Help us to trust you despite what the world says. Take those precious tiny lungs and transfer them safely into Parson's body with the hands of skilled surgeons who are guided by the Great Physician. And then PINK them up, as your life blood flows through that miraculous tissue. And when her sweet cheeks get flush from the oxygen bringing life and vitality to every fiber of her being, God, we will give you ALL the praise and glory! In Jesus MIGHTY name, Amen.

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. 

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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