Tuesday, August 27, 2013

BIG week here ...

This week is Parson's 3 month post transplant evaluation.  That means she is undergoing a whole battery of tests so that she can show them that she is clinically doing GREAT!   

We started last week with a physical therapy evaluation and an occupational therapy evaluation. Her infant lung function test took place this past Friday. Yesterday she had a chest X-ray, blood work, pulmonary clinic (doctor visit), medicine/prescription review, then bloodwork again. Today she had a bronchoscopy with alveolar lavage and biopsy. She has done great for all the testing so far. She is such a champ, they were surprised that she  didn't even cry when they pricked her finger.

Wednesday she will have her regularly scheduled therapy. Thursday is another clinic visit where we hope to hear the BIG news we have been waiting for - "You can go home!"  This Momma is getting just a little bit excited typing all of this. (That jet ride on February 4th was a long time ago.) Friday she is scheduled for a cytogam infusion (4 hours) and will get her PICC line out after the infusion. Woohoo! 

The thought of coming home is SO very   exciting. My kiddo got new lungs & we are getting to come HOME!  That makes me Happy Happy Happy. Our family will be together again and distance will no longer separate our hearts. 

When we get home, we will continue our new normal and get back in the swing of things with Darby & Daddy. Parson takes many anti rejection drugs each day to allow her body to receive the donor lungs without rejection. These meds work really well and destroy her immune system in the process. So we will work to stay away from germs, sick folks & anything else that may make her ill. Please know we love each of you & would love to have heaps of visitors and run all over town visiting -- but for Parson's sake, it just isn't the best idea for a while. Thanks for understanding why we must sneak around town in and out of places quickly & not linger anywhere for long.  Please know that we are not being snobby -- I wish I could stop everyone on the street and visit for a while to share her story. 

My heart is so full. Thank you for the love, prayers and support you have shown  our family. You have made the load lighter and our hearts so full. Thank you friends - We have come a  L-O-N-G way baby! 


June 8 - First pic after transplant

August 26- Clinic visit

Infant lung function test

Blood work at Infusion Center

Clinic visit with Dr. Mallory

Getting ready for bronc  

Monday, August 19, 2013

Life is not fair...

Life is not fair. I first learned that in my 7th grade math class when everyone was cheating and making A's and I was honestly struggling to earn my pitiful grade of a C.  7th grade hit me again with the "not fair's" when I didn't make jr. high cheerleader. (That is the first time I hadn't gotten something I REALLY worked for and wanted.) After the world started spinning again, I picked myself up, dusted myself off & started over again.  Seventh grade was my rookie season on the "B Team". Years later, now I know the "B" was for Plan B. 

I really struggle when bad things happen to good people. I question God when a tremendous 19 year old, full of life has a tragic accident and his earthly days come to an end way, way to soon. 

I struggle when a pediatric physical therapist (who has spent her life pouring her heart into getting kids in the PICU to "move") gets a diagnosis of ALS that will take away her ability to move & serve others. It hits me square between the eyes again -  Life isn't fair. 

I struggle when an amazing christian husband and wife who would make a fantastic mom & dad struggle to conceive a child.

I struggle when a doctor devotes his life to make the rest of us well and then receives a cancer diagnosis for himself. 

I struggle when I see Parkinson's and Alzheimer's slowly rob the very spirit of my loved one one day at a time.

I struggle when I see a nurse practitioner fight day in and day out to provide excellent, compassionate care to my child while quietly battling her own fight with MS. 

I struggle when I think about a spontaneous gene mutation that has altered every single day of my child's life. 

Life is just not fair. These are good people - Certainly some of the best. They have a heart of gold. Ugh. Why? It is the ultimate sucker punch. Simply Brokenhearted. 

The "prosperity gospel" would have me think that if I "believed enough" or "had enough faith" that these "not fair" things wouldn't be for me or any of the other good people. But I have learned over the past year of living in the middle of Plan B that prosperity isn't what I need - the word of God is what I need. It has nothing to do with being "good".  

When I begin to question God, I have to go back to some words I wrote in the front of my Bible many many years ago ... "Every single thing has been filtered through His hands."  He knew the diagnosis long before it was given.  He knew the exact number of days we would share with our loved ones here on this earth. He knew that there would be times where we would be broken hearted, worn, and have our very spirit crushed.  

"Not only so, but we also glory in our sufferings, because we know that suffering produces perseverance; perseverance, character; and character, hope." - Romans 5:3-4

On the tough days like today, when my mind gets bogged down in the "Life's NOT fair" -  I go back and think about the story of Joseph in the Old Testament.  He had his fair share of bad days and understood that life was not fair. He went through terrible suffering.  He served time in prison for a crime he didn't even commit. And he was sold into slavery by his very own brothers. After the whole ordeal Joseph said in Genesis 50:20 : “You intended to harm me, but God intended it for good to accomplish what is now being done, the saving of many lives.” Ultimately God used Joseph and his experiences to save his own family and point many other folks to the savior. 

It is really easy to stand up and praise God when you have just hit the walk off home run.  That makes it so easy to do the "happy dance" in the dugout. We have all practiced that dance a million times in our dreams. But let's face it-- It isn't easy to be on the losing end of life. We don't dream about losing or getting beat over and over again. But I would venture to say that I have learned more about life and love during the losing seasons.

Some of the best things in life have come to me through the losing seasons. Because my child was so very sick, I drew nearer to God than I had ever been before. Let me tell you -- HE is the healer for the broken hearted. Redemption wins in the end.  He can give you rest. He will walk with you through the very roughest of days/nights. His grace is enough.  Especially on the days when you are on the losing end - hold tight to His promises.

I Corinthians 2:9 provides an amazing truth for days like today --“No eye has seen, no ear has heard, no mind has conceived what God has prepared for those who love him.” God has promised a time when there will be no more suffering, no more pain, no more crying, no more tears, and we will be reunited with HIM in perfect harmony. When we belong to Him -  this world is not our home, we are just passing through. Glory! 

Plan B is rough and uncomfortable. Fall into the arms of Jesus.  
He loves you with an unfailing love. He will give you hope. 

Saturday, August 3, 2013

Mind over Matter

Mind over matter.
Fake it till you make it.
If it was easy, everybody would do it. 
Put on your big girl panties. 
Big girls don't cry. 

Those are all phrases that I have repeated over & over to myself throughout the past year. But the one I say most often is "It will not be like this forever."  I began saying it during the long, hard days back in the PICU when I would go into the public restroom and brush my teeth early each morning and late each night. (Many times with tears in my eyes.)  

It is good "positive self talk". The phrase applies to the hard times as well as the good times. It will not be like this forever. I really believe it. 

This past week was a BIG week. It was the final week of the five week narcotic medicine weaning plan. Whew. We made the final wean of methadone Monday and Ativan Wednesday. (Methadone is a synthetic opiate/analgesic used to treat moderate to severe pain. It is a "man made" heroin. It was a step down from the strong IV Meds she was on in PICU.  Parson has been on the drugs for about 6 months.) Bless her heart, she is such a little trooper. It has been extremely hard for her and she has had significant withdrawal symptoms.  Her sleep pattern is completely out of whack and most nights she only settles for about 45 minutes at a time. The old alarms that used to alarm in the night to tell me she needed oxygen no longer alarm because her lungs are doing GREAT!  The new alarms are those of a baby that has finally learned how to cry & fuss. What a blessing!  She is unsettled from drug withdrawal, has diahrrea, chills, sweating, is irratable and on top of all of that she has a whole mouth full of teeth trying to come in. She is also still having trouble swallowing. In addition, she is having a significant amount of reflux - especially when laying down. Recent tests confirmed the reflux, which is a bummer since she had a Fundoplication surgery prior to transplant to take care of the reflux. We will meet with the surgeon next week to schedule another surgery for a repeat fundo and repeat repair of an umbilical hernia -- Looks like she blew both. It will not be like this forever. 

My sweet friend gave me a new necklace... It has a new phrase that puts things in perspective. It says... Life doesn't have to be perfect to be WONDERFUL.  Love it. It certainly fits for the last week of drug withdrawals .... Gonna add that one to the "positive self talk" phrase collection. 

It has been so great to have our little family back together for the past few weeks. Darby is crazy about Parson and Parson is absolutely nuts about Darby. Rodney & Darby left to go back to Jasper and resume their work/school routine. Them leaving has brought on a whole 'nother level of withdrawals for Parson and me both. Rodney took the training wheels off Darby's bike yesterday and had plans to work with her over the next week to help her learn to ride without the training wheels. She made quick work of that little chore and is riding on her own.  Time flies when you are having fun ... It will not be like this forever. 

We will get to join them at home before long.  As of now, we are scheduled for our three month post transplant evaluation the final week of August. If all goes well, Parson will receive her final infusion and should be given clearance to return home sometime after that.  In the meantime, we stay really busy with dr appts, physical therapy, occupational therapy, blood draws & infusions. Other than the withdrawals, Parson is doing  really GREAT!  Thank you Jesus for this new baby. I will take a fussy baby over one that is fighting for her every breath any day!  

In everything giving thanks rejoicing always... (Even withdrawals)  Because it is not gonna be like this forever. 

OT using a sucker to work on swallowing & oral motor skills 

My Uncle Willie says dumdum suckers are great. 

Darby took Daddy grocery shopping. 

And she's off!

Par working hard with Katie in PT

Headed to clinic. 

Taking off the Training Wheels

We got a "pass" to go HOME this past weekend - and it was wonderful!  I got to see Darby riding her bike (without training wheels), got to see the chickens dogs & cat, got to breathe in some good country air and eat some fresh peas & cornbread.  I also got to hug my Momma's neck.

It was a bitter sweet trip...The world lost an amazing man this past week. Mom's brother and my beloved Uncle Willie saw his earthly life come to a close and began his new life in Sweet Beulah Land. He is high stepping, standing tall and I am sure the crowds are already lined up to hear his stories wherever he is "holding court".  He believed in working hard and playing hard. His smile was contagous. He never met a stranger. His advice was second to none and his heart was as big as Texas.  With him joining my Daddy in heaven, the allure of heaven got a whole lot sweeter.  I'll miss you Uncle Willie. 

Monday we met with Dr. Cass, the surgeon who did the Fundoplication & hernia repair before Parson's lung transplant.  A recent pH probe test showed that Par was still having significant reflux (especially when she is laying down). Dr. Mallory thinks the surgery could help with her reflux & protect her new lungs from reflux. She had an upper GI last week that looked ok and didn't show any reflux. Dr. Cass was not in a rush to repeat the surgery when weighing the risks. He was going to consult with Dr. Mallory and they would determine whether Par would benefit from a repeat of the surgery at a later date.  

Parson is doing better everyday. She finally gritted through the last of drug withdrawals and her smiles are back.  (Whew - I survived too - drug withdrawals are NO JOKE - don't ever let anyone tell you any different!). She is beginning to vocalize again, beginning to show interest in toys, sleeping better at night,  putting her feet in her mouth again, and is rolling over and putting weight on her arms.  All of those things are small steps toward catching up on some developmental milestones she missed while she was so sick. To top it all off, every tooth has a new neighbor moving in on each side -  a whole mouth full of teeth coming in at one time. She is such a good sport - I know she has felt like junk but she is such a good sport in spite of it all. A real life lesson in true grit.  

I am so thankful for better days. It sure is  fun to take off the training wheels & make a little trip home. 

Below are a few recent pics ....

Darby let Parson wear her headband...

And they were swinging...

I think she likes it...

Mmmmm tasty toes...

Look out - Darby has a really, really loose front tooth...

My new snaffle tooth...

Mule riding with Daddy is pretty fun...

Look Mom, I am on my belly! This is a really cool polka dot quilt my Gee Gee made me. 

Just love this pic of Darby - (thanks Dorothy.)