A Night At Home - May 4, 2013

With a little trepidation that’s overshadowed by the pure joy of being home, we are in our own bedrooms tonight.  The last week lasted a year, but only took a few minutes.  We’ve been to this rodeo many times yet somehow it always seems like the first.

I’m really proud of my kids.  Jessi stayed by Garrett’s side and Dinger kept a great attitude.  His biggest fear after learning what the game plan was to be is the memories of the pain he went through three years ago.  Our Good Lord, though, has seen fit to grant him a bit of a reprieve, the extra courage to Cowboy Up again and do what has to be done.  He got through last night and the first 5 sessions of treatment without any real issues.  So they let us go home tonight!!! 

That little furlough is huge in our eyes.  Last time they wouldn’t let us go home for three months!  We always use ‘home’ as a gauge.  If they feel comfortable enough to let him sleep in his own bed, then we know they’re not concerned about any immediate catastrophic events.  We have a journey yet ahead of us, but at least the future is more encouraging today than two days ago.  We still have to be in Denver for two or three days each week for the next few months for the IVIG and photopheresis, but with the picc lines in place, they’re letting Kathy and I give Garrett the IV methylpredinsolone here.  We went through the training and take no chances with infection or contamination.  Round one at home tonight went without a hitch.  We use a saline flush, followed by the methylpredinsolone, followed by more saline flush, then a heparin flush.  We’ll do this a few times a day for the next week or so.  He’s also on some oral meds for the sinus infection and some other Rx’s to help prevent bad reactions to the chemo.

For the first few nights at home, Garrett will sleep with me.  Right now he lays next to me, deep into a hard earned slumber.  As I watch him breath, taking in the pure magic that is life, I find myself looking at the bandages surrounding his arms, protecting the picc lines.  How many times have I seen him wrapped up in some kind of medical packaging with tubes hanging out of him?  Hundreds?  I’m so grateful we can share these moments but I still hurt for him knowing that he has to go through this again.  He was less than five minutes old when he got the first IV in what would become a long string of painful memories.  There have been countless invasions to his body since that day, but he still drives on and Cowboys Up.  His glass is always half full.

I know he’s ok, but just the same I’ve set my alarm so I can get up and check on him a few times through the night, just to be sure.  He’s got about 15 inches of picc line in both arms, going up through his shoulder area and down into his heart.  This puts the medicine exactly where it needs to be and allows for a smooth transition when they run the photopheresis on him.  The tiny rubber tubing also keeps the harsh chemicals from burning his veins.  We’ve got to maintain a vigilant watch on them to keep out infection and keep them from being pulled out by accident.

Our Church family was really great when we got home tonight.  They brought a fantastic spaghetti supper to our door so Kathy wouldn’t have to cook tonight.  That little gesture means more than they know.  She was so beat from stress by the time we got home and that small act of kindness was greatly appreciated.

Jessi got a surprise, too.  She got to go to her best friend’s place tonight for a sleepover.   Tinker has been such a silent trooper with Garrett’s issues and hospitalizations that sometimes her needs get put on the back burner.  A lot of plans for the year have now been changed, but I’m committed to making sure her dreams are not pushed aside any more than absolutely necessary. We were supposed to work calves in tomorrow with friends, but our participation obviously had to be canceled.  We were also supposed to be hunting turkeys this weekend.  She really wants to get her first bird but we’ll have to put that off now for a bit.  But her “sister” Aleeyah’s folks came and got her so her whole weekend wasn’t lost.  They treat her as one of their own and we’re indebted to them.  She gets to hang with them for the weekend, ride horses and go to a rodeo on Sunday where the girls will get to chase barrels and bring home the prizes! 

The outpouring of selfless support, kindness and love through these bumpy trails over the years never ceases to amaze me.  With what I do for a living, sometimes I let the true heart of this great land get eclipsed by the degradation and decay placed on our society by a deafening few despicable miscreants.  Earlier this year I saw two of the most precious little lives snuffed out by pure evil.  The darkest recesses of my mind couldn’t have imagined the scene that will forever be burned into my mind.  But you all are among those who make me proud to I do what I do.  It takes warriors to fight evil, and we’re all called to be soldiers of the Cross.  In this story, Garrett and Jessi represent the pure hearts we battle to protect, you and I.  Thank you for showing the face of Christ in your lives; For Jessi and Garrett, and all those like them.  Kids deserve to be kids.

God bless,

JD

" And whoever receives one child such as this in my name receives me"

May 3, 2013

Well friends we’re mostly through day one, round one.  Sorry this is such a long post, but my phone’s been blowing up with folks wanting to know what is happening.  I’ll do my best to explain it.  It’s about 1130pm, Garrett and Jessi have both finally fallen asleep; Him in his hospital bed and Jessi in the recliner next to him.  She won’t leave his side.  Kathy is sleeping in a family sleep room across the hall and I now have a few quiet moments to jot a note or two. It's been a long several days, fighting the good fight.

Today was like drinking from a fire hose.  We got up at 0530 and headed to Denver.  Because of the storm, we got stuck in the parking lot called I-25.  When we finally made it to Children’s, we met with his transplant team and they told us what we are up against.  In 2010 when Garrett was admitted because he got sick from a very nasty rejection episode, our backs were against the wall.  We learned things about  B-cells, T-cells, auto-antibody rejection, acute rejection, chronic rejection, acute vascular or humeral rejection, OKT-3, IVIG, CD4-T cells, CD3, lymphocytes, fibrosis, mycophenolate, myocardial movement, imuran, immunosuppressant, chemotherapy, plasmapheresis......................the list goes on and on.  He was very sick.  We took a particularly aggressive approach to fighting the rejection and he got sick from the treatments.  Since then things have changed and we’re hopeful this time will be easier.

We had to go into the O.R. today to surgically implant picc lines.   A PICC (peripherally inserted central catheter) is a real long tube that goes directly into his heart.  Last time they had to be put in his neck.  Since then they’ve found that using the veins in the upper arms on older kids works better.  Because Garrett’s active and has been doing lots of pushups, his veins are big and open so it was a slam dunk.  He was extremely scared, though, and so they made an exception to the rule of the operating room and suited me up.  Because they did not use a general anesthetic, Garrett was awake.  His anxiety level was high, but he wanted me in there.  We’ve practice our ‘tactical breathing’ for years and today I was his coach.  He looked up at me and we talked our way through good breathing exercises while they put the lines in under a local.  It worked well and they were able to get both of them in easily.  The whole process only took about an hour.

Right now Garrett’s one hour into a six hour infusion treatment with IVIG.  He’s already had one round of photopheresis, which is similar to the plasmapheresis treatments three years ago when he had the last severe rejection issue.  It’s similar to dialysis and is basically a high-tech oil change that uses UV rays to bombard the lymphocytes.  That takes about three to four hours per treatment, then a two hour infusion of a steroid treatment, followed by the IVIG.  The IVIG blocks the antibody receptors on immune cells, leading to decreased damage by these cells. 

All of this is focused on T cell lymphocytes.  They’re a type of white blood cell.  We all have them but in Garrett’s case, he’s got a band of nasty little Al-Qaeda cells (that’s what he and I call them) and they’re trying to kill his heart.  The treatments are a form of chemo therapy designed for T cell lymphoma patients, but they’ve found it works to help heart transplant recipients fight rejection when they’re T cell driven.  Aside from a nasty little rash that broke out earlier tonight and has since dissipated, he’s comfortable.

The good news is that Garrett’s PRA (Panel Reactive Antibody) numbers are lower than three years ago.  That’s good!  A high PRA can cause immediate rejection of a transplanted heart, in spite of powerful anti-rejection medications available right now.  Last time we were fighting a high PRA and a zero reactive T cell score.  This time we’re fighting a lower PRA, with a higher T cell score.  Basically, he has an acute rejection caused by bad lymphocytes.  Follow so far?  Me neither.

He’s got to go through about 6 weeks of this.  In July, he’ll have another biopsy surgery to determine how successful we’ve been.  The emotional roller coaster ride has been pretty tough but he’s a remarkable young man who does not have an ounce of quit in him.  I wish we weren’t here right now, but feeling sorry for ourselves isn’t going to make it go away. 

Garrett’s pretty upset that his baseball season has been interrupted again, but he’s keeping a positive attitude and I’m proud of him. He constantly thinks about his cousins Levi and Noah and his Uncle Doug....they help motivate him to stay strong.  But taking baseball was a pretty hard blow.  He loves his sport so much and now can’t play for at least a couple of months, if all goes well.  By then his current league will be done, so hopefully he can get picked up by a summer club.  They’re more expensive but I think he’s earned it, don’t you?

All of these challenges we all face have glimmers of hope behind them if we look hard enough.  One email I received today reminded me of the beautiful passage in Romans Chapter 5.  It reminds us that there is glory in our suffering because we know that suffering produces perseverance; in perseverance, character; and in character, hope.  Hope is that magical term that gives us great expectations of wonderful days ahead.

We look so forward to those wonderful days ahead. Your support and prayers help more than we can express, and I'm very grateful.   We will never give up the fight.

God bless you all,

JD

Change In Plans May 2, 2013

Well friends, I'm not even sure where to start or what to say.  After a few tough days and waking today in his own bed, Garrett was feeling on top of the world.  He was as giddy as he'd been for some time, KNOWING that the bad part was behind us.  Unfortunately, the pathology report came back today with less than optimal news.

Garrett's left ventricle, showing those pressures that were not what the doctors wanted to see, was because he's in rejection again.  A very aggressive attack has begun on his heart and we are headed back to the hospital first thing in the morning.  Garrett will undergo a surgical procedure to put in a 'pic' line and begin infusion, in-patient treatments immediately.  The CT scan also shows sinus disease.  Since there is a direct relationship between the sinus' and the heart, treatment will begin immediately there, too.

We don't know why we have to go down this road again.  Garrett is scared, but also a little mad.  He was crying today and told me "daddy, I'm sorry I let you down.  I guess I didn't take good enough care of myself."  I've done my best to help him understand tonight that he's done nothing wrong.  This is just the way it is right now and we'll just have to stay strong and warrior through it.  To Cowboy Up.  He smiled and told me that we'll just have to knock this one out of the park.  His strength and resolve is encouraging.   I just wish he didn't have to show it so often.

I can't say more right now.  We won't know how long we'll be in Denver for a few more days, but I'll post when I know.  As we all knelt and prayed together tonight, we asked God for strength and courage for the upcoming fight.  We pray it's not as tough at 2010.  I know HE has the perfect plan and somehow this is part of it.  We'll keep trying to serve Him as best we can.

In Jesus' sweet name,

JD

Biopsy Today Update - April 30, 2013

I need to start off by apologizing to many who read this, who didn’t know Garrett had a biopsy scheduled.  He’s not sick, but this was needed.  Because of the severe rejection issues two years ago, they needed to go in and get a good look at how his heart was doing.  It was initially planned last spring, but because he’d had such a tough couple of years prior and had made such a remarkable comeback last year, they decided to give him a year off.   The anxiety of repeated hospital stays, surgeries, pokes, prods, harpoons and lances had taken their toll.  He needed a break.

So it was planned for today, but we kept it kind of quiet.  We didn’t want to make a big deal of it, for Garrett’s sake.  Just the same, it was a tough last few days.  Try as he could, the nightmares of days gone by crept in.  He couldn’t sleep last night, which meant none of us did.  This morning for the first time in a very long time, Garrett cried.  He tried to stay strong but was so scared.  He had his best friend Gavin with him, which was a God send.  But he cried and told me “Daddy, I don’t want to be here.  I’d rather be on the baseball diamond.  Tell Gavin “I’m sorry for crying in front of him.  I want to be the brother who’s not afraid of anything.”

As in 30 surgeries before today, I took that tear from his face and placed it on my own.  The only difference this time was that I couldn’t carry him into the operating room.  My back won’t take it.  He’s gotten so daggone big!  But I did suit up and walk beside his cart into the room and helped him onto the table.  As they started the anesthesia, I again softly sang “Too-Ra-Loo-Ra-Loo-Ral” until his eyes couldn’t see me anymore and he slept.  Kathy and Jessi and Gavin all quietly wept, too, afraid for Dinger and of the unknown.   Too many times before we’d received rough news from a biopsy procedure.  This time was to be different.

This biopsy was the ‘full meal deal,’ going into both sides of the heart, all pressures, valves, arteries and veins.  The initial prognosis is very good.  His coronary arteries look amazing!  They are big and open and show no signs of failing.  The pressure in his left ventricle is higher than they want, but are not going to pass judgment until the pathology results come back.  If we get good news by Friday, it’s no looking back for quite a while.

He’s sleeping tonight in his own bed, connected to a bunch of wires for a Holter monitor.  The Holter is a portable device for continuously monitoring various electrical activity of the cardiovascular system for at least 24 hours.  It will monitor his heart EKG  and arterial pressures. It watches for occasional cardiac arrhythmia events.   They do this after the biopsy procedure because of the stress on the heart during the surgery, etc.

He’s still a little scared about what the “numbers” will come back as, referring to the system of measures the docs use to gauge the health of his heart and potential for rejection.  When he woke up this afternoon, his first words to me were, “how did we do daddy?  Did we hit a home run?  Do I have to stay in the hospital again?”  And he began to softly cry, afraid that like last time, he’d be in rejection. 

On the way home he remarked how his “uncle Doug” (Brigham) had to be with him today.  Doug was one of my very best friends and was killed in a helicopter crash last fall.  He was very close to Garrett and Jessi and championed for Garrett every chance he could.  In Doug’s memory, his wife and friends have started a foundation (http://www.dougbrighamfoundation.org/ )dedicated to helping families of first responders with medical bills.  Doug definitely was there with him today.

So a very long and very long overdue update comes to a close.  Garrett has started playing baseball again and his team won 12-3 last night in his honor.  It was a sign, I believe.  So, too, are the eye-black stickers he wears in his games.  Just like Tim Tebow, they read "Phil 4:13." (I can do all things through Him who strengthens me.)  Yes my little warrior cowboy, I believe we hit a home run.

God is good.  Don’t forget to thank Him.

Blessings to all,

JD