May 24, 2010

Today was a tough one. After a relatively uneventful night, Garrett woke up to doctors in the room preparing us for the day’s events. Unfortunately, talk is cheap and it’s hard to sugar coat the angst, pain, excitement, fear and gremlins that lay ahead.

I don’t know if it will help, but I’ll try to explain the procedure and what it is intended to do. A two-hour surgical procedure was conducted to place a main-line jugular vein double-lumen central venous catheter in Garrett’s neck, just below his ear. They sew it in place to keep it from being compromised and cover the incision with a large gauze pad and a thin, clear tape-like protective guard. Two big ports are available outside of the skin and these are used for the plasmapheresis. For the 25th time, I held his hand, took his first tear and kissed his forehead until he fell asleep.

Sometime this afternoon, the oil change crew came in with three large carts. One held a computer terminal, another was a crash-cart and the third was the machine itself. It kind of looks like a dialysis machine on steroids. The plasmapheresis machine reminded me of something out of “Young Doctor Frankenstein”. It’s used to separate the blood platelets from the plasma. When a person has autoantibody rejection, the bad stuff attaches to the plasma. By removing the bad plasma and replacing it with good plasma substitute, the hope is that if done enough times we can remove the anti-bodies that are hurting Garrett’s heart. About .00004% of the world’s population will undergo a similar treatment.

One of the lumen ports draws the blood out of Garrett, through a clear filter and into the machine. It works its way down into a large impeller spinning at about 1465 rpm. As the plasma is pulled from the blood cells, it is put into a container. The blood then is mixed with the replacement plasma surrogate and sent through another filter to them mix with some other key ingredients and into Garrett via the other tube. 130% of the blood is “cleaned” this way, or one and one-third times. This will happen four times over as many days.

About 4” of tubing about the size of a child’s juice straw extend out of his neck and catches on everything. He has trouble moving his neck around without discomfort and is afraid he will accidentally pull it out during the night. The biggest risk to the site, quite frankly, is blockage or infection.

The first round didn’t go flawlessly, but did get done. The lines blocked with coagulation a couple of times and one of the lines got kinked and stopped the flow. One blockage took nearly 30 minutes to clear, with Garrett holding his neck at a 30 degree angle while they worked to clear it. It was dang tough to watch and he was plenty played out and cranky by the end of the day, but he earned it. He was running a temp by the time it was done though, and that’s a little worrisome.

Tomorrow will resume more anti-rejection infusion through the normal I.V. in his arm, and the second round of plasmapheresis will take place at some point along the way. It’s not going to be an easy few days, as the process requires a lot of lying in bed not doing anything and being uncomfortable and scared. But we have to hold onto the blessings that we learned on Friday last. The coronary arteries looked great! Coronary Artery Disease of the Transplanted Heart is irreversible. What we’re fighting now is not.

Garrett got a visit from his "cousins" Lorin and Maggie today. We love them so much. The nurses Garrett had today were also outstanding and truly helped his mind set. When he got back from the surgical procedure, his room had been done up in pictures of bull riders and biblical expressions. On the outside of his door were two printed sheets. One displayed a photo of a PBR buckle that had the inscription “Cowboy Up”. The other simply said “Cowboy Up or don’t come in”. That pretty much says it all. Enter with a positive attitude or don’t drop by. We cannot afford to allow the poison of doubt enter the room.

Tomorrow’s a new day with new adventures and opportunities for victory. Garrett and I talked about this for a while tonight. It may not seem all that obvious right now, but God still has control with His awesome mercy and love. Somehow the birds will wake up singing outside and we might as well join them.

Psalm 3:5 - I laid me down and slept; I awaked; for the LORD sustained me.


JD

May 24, 2010 - Game On!

We have settled in for night two in the Tactical Operations Center, tour two, midnight shift. Area of operations: Cardiac Unit, The Children’s Hospital.

Our little gladiator had a relatively good day. He was able to eat a little breakfast, more for dinner and several tacos for supper. Everything stayed down, and that was a blessing. A few visits from friends and family today helped keep his mind from too much focus on the situation, and this too was a blessing. We took a little walk outside but he petered out pretty quick. But it was a beautiful day and the sunshine and fresh air was great for the soul.

One of Garrett’s surrogate sets of grandparents showed up this morning with good coffee, bagels and fruit. It was one of the best breakfast’s I’ve ever had. After Kathy graciously took the first watch last night I got some sleep for the first time in a couple of days. Sometimes it’s easy to forget how a few hours of uninterrupted sleep can help recharge the batteries. I’ve got it tonight and she and Jessi are across the hall in a family sleep room.

A very special gift today came in the form of our blessed Greenwood family. They really cheered Garrett up. During the week of the second anniversary of Nicholas going to be with Jesus, they put their own pain aside and reached out to us. We’re more grateful than I can express. I'm quite sure one of the reasons God chose Nick, is because He knows the incredible love this family has for others. They arrived this afternoon bearing a bouquet of flowers with a butterfly. The butterfly has a very significant role in this story and I will explain that sometime down the road, but suffice to say we are surrounded by angels tonight.

We also got a visit from one of Garrett’s very best friends in the world. He brought the tacos, which is Garrett’s favorite food. Best buddies always know that kind of stuff. Just the ability to laugh and joke around with friends probably did more for him in a short time than all of the medicine did all day.

We also learned today of another little 8 year old boy who just got his second heart, almost identically to Garrett’s situation a few years ago. The family is petrified and we have given our blessing for the family to visit with us. We can’t feel their pain, but we can sure come close. If we can do anything to help them understand the road, we will. Please keep them in your prayers.

The transplant team explained a little further today what is most likely happening right now. The rejection he’s fighting is still the same one that brought us here in early April. The first round of infusion definitely knocked it down, but not out. It slowly festered undetected until the biopsy. That procedure was enough stress on Garrett’s body for it to show its ugly face in earnest again. The operational plan is not completely set, but we have a pretty good idea of the mission.

Most likely Garrett will undergo yet another surgical procedure in the morning to put a large straight-line tube in his neck that will facilitate at least two separate chemo-type infusions and possibly actual chemo. It will also be used for the plasmaferesis. They also related that it may even take a third try to make this happen, and he will most likely have to have another biopsy in a couple of months.

Garrett is plenty scared right now and said to me tonight, “I don’t even remember what my home looks like. I just want to go home.” “Daddy, why do I have to get sick in order to get better?” “Do you think Jesus is trying to send a message?” Without a doubt Jesus is sending a message. He knows what is best and is obviously using Garrett for His glory. I assured him that Jesus is not mad at him, and he has done nothing to deserve any of this. He is actually very special because God entrusts him with such a powerful mission.

He’s resting now. He was feeling a little poorly tonight, so I’m glad he seems to be sleeping quietly. As I sit here watching him doze, I thought of Ret. Army Lt.Gen. Hal Moore’s number one leadership principle – “Three strikes and you are not out. There is always one more thing you can do.” That is where we are right now. There will always be one more thing, and after that, one more. We love and ache for him so very much it's as if a sword is being thrust through us as well. Watching your child, day after day hurting and scared tears at the very fibre of your being. The temptation to mope and brood is so strong, but we will not weaken, nor will we display anything but a positive attitude. Anything less is inviting failure and complete victory is not optional. There is no kidding around about this one. We are in a battle and it’s game-on.

Tomorrow is a new day. It will try to have us be full of trepidation, but we will arm ourselves with the power of God and the warrior spirit of one bullhide tough little cowboy. He may have scored 99pts on Bodacious the other day, but now he's pulling his rope on Mossy Oak Mudslinger. We will continue to Cowboy Up. He does.

End your day on your knees, and I promise you’ll land on your feet in the morning.
God bless you.


JD

Back In The Hospital

Life is a conundrum. It surely is full of questions.............

I'm at a loss again. This is tough to write, but so many of you are waiting to hear. I have told only a few that I had a sixth sense that something was up with Garrett, as I've noticed some very minor changes since I saw him last week.

We found out this morning that the biopsy came back and it is not good news. Scoring the numbers from 0-4 with 0 being perfect, Garrett's tissue pathology scored at 3+. We have had the wind kicked out of us right now and are trying to catch our breath. While the coronaries look very good, the rejection has not been stopped. In fact, it is very bad they said. Garrett was admitted to the hospital again and must undergo another series of anti-rejection infusions plus a process called plasmaferesis, which is like dialysis. We don't know how long he'll be in this time, but it looks like at least a week. He has to undergo another surgical procedure, this time to put a large shunt line in his neck, directly to his heart. The infusion meds they're going to use are stronger than last time and we can't forget how bad he reacted to the last one.

We'd asked if he's safe to wait until Monday, and they initially said yes. They can't do the surgical implant until then anyway. He's been sick today from yesterday's biopsy and we were hoping Sunday he'd feel better. I just wanted him to have one more day of not being afraid before we jerk the rug out from under him again.

We weren't going to tell him until Monday morning. He was fortunately sleeping when they called this morning, which gave us time to dissolve and re-build our composure. But, he’s been throwing up all day and running a low grade fever and that tipped the scale. They believe the rejection is coming on very fast with a fervor right now. This will surely break his heart because he thought the worst was passed this time.

By 6:30pm we were headed back to the emergency room. It took a little longer to get going because I was trying to get our things together in between holding him while he threw up. Once here, it took 4 tries in different locations to finally get an I.V. started because his little veins are so scarred. He gave a "Cowboy Up" bracelet to the nurse who finally hit home. She was the third one to try. It's 11:30 now and we finally got settled back in to the cardiac critical care unit. Kathy and Jessi had actually headed home this afternoon to see Levi and let Kathy spend the night in her own bed for the first time in a month and a half. It wasn't to be. She scooted right back up here and met us at the hospital.

He got round number one tonight. He was very scared and cried like he had a right to. He told me again that he doesn't want this to be his time. He wants to get well and go back home. But like the little fighter we all know he is, he told me "daddy, I'm not going to quit! We're going back into battle again."

I know that God has something very, very special planned for this little boy, I just don't know what it is right now. All he wanted was to go home for his birthday in June. Now he'll be deep into round 2 of a very nasty fight.

When I find the words from God to explain further, I'll put something on this blog. We just ask for continued prayers for patience, strength, wisdom and grace. We are still in this fight and will NOT let the bastard (satan) win.

Thank you for your blessings.

JD

"evil prospers when good folks do nothing"

May 21 - Finally Some Answers

The day we’ve been waiting for has now come and gone. We now have some answers to lingering questions. While some still remain, mercifully it's obvious that Garrett's heart is healing and now, so is mine and Kathy's. Today, he Cowboy'd Up and then some. This boy has GRIT!

Tonight folks, we are faithfully confident that we have received what we have been praying for. Today was victorious, but not perfect. While we have a journey yet to complete the outlook is good. Garrett is now asleep once again beside me, and for the first time in a few weeks he doesn't have to worry about the biopsy. It's over. He is real uncomfortable with a lot of pain from the incision but his mind is quiet allowing him more peaceful rest when he can sleep. At least for now, he's not scared and I am grateful.

I woke Garrett at 4:15 this morning to let him have something to eat so he wouldn’t have to be so hungry all day. 5am was the latest he could have anything in his stomach before surgery. Of course that had to have a funny twist to it, too. Garrett and I were both up past 1am and our brains were moving like molasses in February. I poured him a bowl of cereal and being in an unfamiliar kitchen, grabbed a bowl of what I thought was sugar, putting a healthy dose on top of his snack. After taking one bite, Garrett’s face contorted to look like a freeze-dried shar pei puppy. I had unwittingly dispensed salt over his rice krispies instead of sugar! After we got the nasty taste out of his mouth, we both laughed our tails off. Anyway, he eventually got a “real” snack and we went back to sleep.

At about 8am the hospital folks called and told us they had an earlier cancellation and asked us to come in right away. This was good news! We hustled around and as we were heading out the door Garrett gave a big sigh and firmly stated “Well, daddy. I’ve got another bull to ride. Let’s go.” What a warrior attitude!

During the preparation he began to show his trepidation in earnest as a tear slowly rolled down his cheek and he said again that he just wanted to go home. But true to form, he stayed the course but demanded that he had his Ralph bear and something of Jessi’s with him when he went in. He said he wanted his baby sister by his side.

One of the surgical nurses came in and gave him a cocktail to settle his nerves and that helped. She told us that Garrett is well known there and they have discussed his distaste for needles. Apparently, during a past biopsy, Garrett came around as they were about to start the procedure and “decked” one of the operating room staff. She laughed and said “that boy really hates to see anyone come at him with a needle”. Garrett never remembered that and none of us knew that story until today. Wow! Now that’s a warrior mindset. Folks, it's just not safe to approach a wounded bobcat! Ok, nurses. Whadyalearn?

I gowned up for the trip into the surgery room and we made the long, short walk. When I laid him on the table today and they put the sleepy mask over his mouth, he looked up at me and the tears flowed. I leaned in very close, took that first tear and softly sang “I can only imagine” to him until he fell asleep. It never gets any easier.

When Kathy and I walked out into the waiting room we were met there with a beautiful surprise. Nicholas Greenwood’s mom and dad had come down from Ft. Collins to be with us. This is the incredible family I’ve written about in the past, who lost Nicholas in 2008 and unselfishly donated his organs to other children. We spent the next few hours with them catching up and were so very blessed by their company. Nick’s dad, Bill, joined us all in prayer for Garrett and it was truly a “God” moment. They are so inspirational. They started a non-profit, Christian based athletic program to honor Nick and call it G.R.I.T. See it at http://www.gritwrestling.com/
We're truly grateful for their company today. What an amazing family.

When the procedure was done, the doctor came out to us. The fears we had were calmed when she spoke, and Kathy finally stopped shaking. Garrett did great, and his heart is healing. The coronary arteries look fantastic and three chambers of his heart are functioning very well. One of the left chambers is producing really high filling pressures, which over time if not corrected can cause issues with his lungs. But the doctors are not surprised, because he was so sick. They think he would have registered at about a 21 pressure a month ago, but they couldn’t do the cath then as it was unsafe. Today he was measured at 14. The target range is 3 to 4. This could explain the still increased heart rate. She said it could take up to a year to recover fully based on what they see, and reiterated that he was very sick when we first came in. They don’t even do a biopsy and cath procedure as a general rule for most rejections, but Garrett’s was so significant that we needed to do this to be sure he is healing.

All we’re waiting for now are the results of the biopsy itself. That will tell us how the cells look microscopically and let us know the damage the cells may have, and/or if the lymphocytes are playing nice now. We’ll know maybe as early as tomorrow, but no later than Monday. Again, we are faithfully confident that the results will be positive.

When Garrett came around today he was in a lot of pain and had a very sore throat from being intubated. He threw up really hard and that didn’t make it any easier on him, but all he could muster to ask was “what were my numbers” and “when can we go home”. I’m very proud of his demeanor today. He just doesn't weaken. He really is a tough little cowboy. When he was awake later and understood what the doctors saw today, he said “well, I guess I scored a 99 on Bodacious today”. Bodacious was the badest of the bad rodeo bulls for many years.

After 2.5 hours in surgery and several more recovering, Garrett was able to keep food down and get released to go back to his aunt’s house. He has to wear a Holter monitor for 24 hours. It’s a portable device about the size of a walkman that records electrical impulses of his heart function because there’s still the chance that his heart rhythms were disrupted by the procedure today.

Just before he went to sleep tonight, Garrett asked me “daddy, why wasn’t I born normal”. That’s another one of those questions I just don’t have answers to. No earthly man does. Only God alone knows the reasons for the way things are, and the way they will be. Why did Darren go home? Why did Nicholas go home? Why was Megan go home? All we can do is to be committed to the belief that God’s plan is perfect. Garrett was chosen to be a very special child for reasons only known to God. When he then asked if being special meant having to go through pain, all I could do was relate the pain that Jesus went through for us and how He is the most special man who ever lived. He never promised it would be easy. He just promised it would be worth it.

My son is traveling a trail that most will never know. I'm blessed to follow him because I do believe God is using him for something truly great. He has already done more for God in his short life than I could ever imagine. The blessings we’ve received throughout the journey, the support system, spiritual connections and miracles are often more than I am really able to comprehend. It hasn’t been all fun, but it sure is a remarkable voyage.

When we know more, I promise to share.

JD

May 21st, 1:00 a.m.

Garrett is finally asleep. He's been pretty keyed up all day, worried about tomorrow. He called me at work today and his tone was different. He started to cry and said "daddy, I need you". Say no more. I cut out of work early and got to him by about suppertime. He ran to me and nearly squeezed the air out of me, and didn't let go for the longest time.

We grabbed our gloves and threw the ball around for a bit and then he just wanted me to hold him. We laid in the hammock for a long time and then he got a call from his beloved teacher who has been so incredible to him this year. Her timing was perfect, as were "auntie Barb" and a few professional bull riders who called to pray with him and offer encouragement. Those calls helped a lot.

We later retired to the basement to watch baseball highlights together, which is what we've always done at times like this. Baseball and rodeo have always been a part of our therapy. After a little while though he finally turned to me, told me he was so scared and started to cry. He held on to me, and I comforted him while he whimpered and said "daddy, I just want to go home". Kathy and I both just held him and tried to love the bad feelings away. We said our night prayers and in the midst of his overwhelming fears his prayers were not for himself, but for his cousin Levi, who is in stage 4 cancer. Levi is like a big brother to Garrett and also very, very sick.

It really pulls at my gut to see him go through this all over again, but these are the cards we're dealt right now. We prayed and talked for a long time about how much he is loved, and how so very many folks are praying for him. Everything is in God's hands, and there is no more perfect place for us to be.

By 10am we'll be checking in. By 1pm he'll be in surgery for the 24th time in his short 10 years. We will claim victory in the name of Jesus our Lord. Everything will be just fine. Our little gladiator is ready for battle.

JD

May 20. 2010

Today, like many others lately, just couldn’t end without some minor catastrophe of sorts. Keeps us from getting bored, I guess. But like the others, big or small, we beat the odds.

Jessi had spent the afternoon with our wonderful friend and neighbor lady with whom she has grown a very beautiful relationship. Christina and her family have been a God-send to us during this part of the journey. She takes care of Jessi when I cannot be around and Jessi loves her dearly. They build projects, play with dogs, and conduct reproductive studies of the barn cat’s springtime ritual and groom horses. Today they decided to surprise daddy by cleaning the house for me. This was after Christina shadowed Jessi at her school “field day” activities and watched while Jessi won 5 ribbons.

When I arrived home, Jessi went out to check on the horses while we visited. Moments later, my Tinker (Jessi’s pet name) came limping and whimpering into the house. She had stepped on a nail in the feed bunk when feeding carrots to her horse. It was a pretty good wound, too. She was bleeding from the hole in her foot and quite scared. Christina sprung into action immediately, which allowed me to sneak out of earshot to call our pediatrician. Dr. Gilroy is the only children’s doctor I know today who allows me to call her at home. She saved Garrett’s life two years ago by discovering the enzyme imbalance that led to the discovery of his advanced coronary artery disease, and has stayed in close contact with us since. She is a gem! Well, she understood that Kathy and Garrett are in Denver and I didn’t know where the shot records could be kept. This angel of mercy did some research and called me back assuring me that Jessi’s Tetanus shot was up to date.

Needless to say, Jessi will have a sore foot for a few days, but after a good cleaning out and lots of soaking; I’m hoping it won’t get infected and need another trip to the hospital.

It’s amazing the thoughts that can race through one’s head at times like this. I have to be with my boy on Friday morning. He has his double biopsy surgery and I promised him I would be there as I always am, to wipe away that first tear, to be the last person he sees when he goes to sleep, and the first one he sees when he wakes up. But I couldn’t turn my back on my little Tinker, who is the most loving child I’ve ever known. If she needs to go to the doctor and required follow up because the wound was worse than we thought, it would compromise my commitments to Garrett. But somehow, I’d make it happen. I can promise you that!

The days lately have been filled with trying to stay busy enough at work to keep my mind from racing. My nights are rarely for sleep, and mostly for praying, thinking too much and hoping. Knowledge can be powerful, but then too; too much knowledge and not enough at the same time can be terrorizing. Garrett is feeling good, and that’s good enough right now. But I’ve also noticed a very subtle change in him when I was there last. That, coupled with the poor blood work and no change in the echo gets my mind racing. DANG IT! I’m the one who knows we have to ride this bronc one jump at a time. Yet my mind keeps sneaking in what I’ve learned recently about medical statistics regarding similar cases. I just have to know that Garrett has never followed the “statistical line” his entire life. I know that God has blessed me tremendously with the willpower to stay this fight and never quit. The doubts and fears that sneak in are hateful and even in the darkest moments of this fight, when I feel like I’m out of ammunition and have no place to hide, I have called out to my God for guidance and help. I’ve prayed until the world around me became no more. I was completely alone, if for only a moment, with my entire spirit, body and soul beseeching God Almighty to raise us from this battlefield to victory. Never once have I heard his voice, not as the voice of a human telling me what to do. But He has opened my eyes to see His mercy and love. I also know for certain that He has not abandoned or forsaken me. And He knows that for me and mine, we work for Him.

Friday late we will slowly begin to get answers to what seem like just so many questions. How much damage has been done? Has the rejection been caught, and killed, in time. Do the new lymphocytes rebuilding his immune system have and understand the new battle plan and recognize that Garrett’s heart is an ally and not an enemy? We will not weaken. We enter into this new mission completely convinced that God has given us everything we need to be successful for Him. This next week will be filled with emotion. One of great joy and hope, or one of being momentarily stunned and needing to gather our thoughts for the next phase of the battle. Either way, I will be with my family through the week. I will not leave them. We will accept the results, knowing there are but two or three options to continue the fight, and believing, as I do now, that we will be victorious.

When I know more. I will let you all know. Your prayers help sustain us, and for that I'm very grateful. I have a feeling though, that this tough little warrior will put on his coat of God’s armor as we pray prior to surgery, and he will emerge triumphant.

You give me your shield of victory,
And your right hand sustains me;
You stoop down to make me great." Psalm 18

JD

May 17, 2010

Jessi and I got to spend a couple days with mommy and Garrett this weekend and are now back, getting ready for work and school again. It was a good few days, though, but just too short. We took a little walk at a nearby pond and just enjoyed being together while he's feeling good. He had some pretty wicked nightmares again this weekend, but we worked through them by watching baseball or rodeo like we always have until he could fall back asleep. As the week progressed, he's bound to get more anxious about the procedure/biopsy surgery. I'd sure be grateful for any extra prayers you have laying around for him, Jessi and Kathy. This will be a long week and weekend until we get the results early next week. Garrett made me promise at least 4 times that I'd be back with him in time for surgery.

His last checkup before surgery was this morning. Everything still looks pretty good. He's lost a little weight, but not much. Although there was no change in his echo, it's good because it didn't get worse. His bloodwork is still all over the map and while we want to know why, we're hoping it's just because his body is trying to heal. When they run the double biopsy this week, they'll get a real good look at this kidney function and we'll know more.

I tried to break up the monotony this weekend by building the kids a roping toy from PVC tubing. It'll give him something to do in the backyard. But I don't think it was near the hit that his other surprises were. He got a box full of goodies from some great folks, including a bunch more baseball cards (he loves those), books, signed Boston BBall and even a rugby ball from a couple in Australia! The love this little guy has garnered is really amazing. Folks are so kind.

When we know more, I'll be sure to post something. I've added a picture tonight of the bracelets his little friends Chris and Joe designed. I'm told they are a big hit in the area and really make Garrett feel "special" to know folks are wearing them for him until he can come home. He really has some tremendous friends, all good soldiers of the Cross, too.

While you're taking time to pray this week, please ask God to comfort the family of Dale Goodell. Dale was a good man and friend of mine whom God called home early this morning. He and Garrett shared similarities, too, as Dale was a bone marrow transplant recipient. He finally lost a lengthy battle that he fought so well for so long. He's at peace now, but those of us left behind will miss him dearly.

This week is a big one. There will be lots of big prayers for the King of miracles to heal a little cowboy so he can come back home with his family. The victory is His, and we ask for understanding and grace as we try to accept His will.

God bless,

JD