Little Victories

The long awaited Monday meeting with the doctors finally happened, about two hours after Garrett had a follow up x-ray taken.  Saturday and Sunday nights were  t o u g h !  Garrett was feeling better during the day, just enjoying the pleasure of breathing without significant pain, but we backed off on the pain management a little too soon and paid the price. 

When things would calm down in the evening and he’d try to get his mind wrapped around another night in a hospital bed, the pain would set in.  We were up all night Saturday and didn’t get any sleep worth mentioning until about 3 am Monday morning after trying most of Sunday night.  I felt so bad for him.  He just couldn’t get comfortable and on top of the pain from the drain tube, he broke out in a rash.  It was easily overcome with antihistamines but took its toll, too.  Then Sunday night, leg pains kicked in to join the party. The poor kid was absolutely miserable.  We walked a lot of laps around the cardiac unit floor trying to work through the discomfort.

When the doctors came in about 9:30 Monday morning, we finally got the full story.  Garrett has an aggressive form of pneumonia, but in addition to some fluid in the lung and the infection, most of the demarcation in the x-rays was actually caused by fluid and sludge in little pockets all stacked up on each other in the space between his lung and the chest wall, and the lung and the diaphragm.  The tube wasn’t actually inserted into the lung itself, but into this void, which should be an open space that gives his lungs room to inflate.  When he would try to breathe, the fluid wouldn’t let that happen and put pressure on his lungs.  One of his doctors, who has known Garrett since he was born, said that in all of his years as a cardiac surgeon he’d only seen it this bad a few times.  It’s apparently pretty rare for them to have to surgically insert a drain tube to relieve the pressure from pneumonia.  Even in these transplant kids, who tend to get pneumonia more often than folks with normal immune systems, a case like this is exceptional.

He’s still putting out fluid, but at a much slower rate than the first 24 hours on the tube.  The plan now is to keep it in at least until sometime Tuesday, then if the fluid output is dramatically reduced, pull the tube and let his body try to work it out.  Garrett’s excited about getting that biting snake out of his chest wall, but will still have to stay another day or two at least to ensure his fever doesn’t return and the fluid buildup won’t repeat.  They want to wean him from the IV antibiotics, too, and go to an oral form.  The pain won’t completely go away for a while, but he’ll at least be more comfortable without needles.

During his biopsy about a month ago, we learned that he still has some nasty lymphocytes hanging on from the last rejection episode.  Since that incident was most likely brought on from lymphocytes that survived the chemo bombardment the previous year when he was so sick.  We’re all concerned that this might shock the system from the pneumonia might stir that hornet’s nest and cause another rejection episode.  Unfortunately, no one can be sure either way.  Someone does know, though.  HIS will is perfect………so we just wait and believe.

Happy Mother's Day 2014

Thursday night after Garrett finally fell asleep; I just sat in his room and stared out the window.  It made me think of all the hours we’ve spent looking down at the world from these windows through the years.  We’ve seen every season, every storm formation, every snow fall type, every rain phase, hail of all shapes and sizes, dead calm and tornado winds, 100 degree days and 20 below.  A few years ago, we watched a Canada goose pair raise a brood from a nest on top of an entry roof.  These windows have shared this incredible journey as it grew from a seed so many years ago.  Funny how I never noticed it before, but I do now.

Streptococcus pneumonia is the term they used to describe what Garrett has right now.  It likely developed from a virus he picked up and it morphed into pneumonia.  He and Jessi have complained that a lot of kids are coming to school sick lately.  I wish parents weren’t so selfish and would keep their kids home when they’re sick.  Most can fight back when the germs are flying around.  Garrett’s body doesn’t have that luxury like others.

While this is a bacterial disease and should respond to antibiotics, it’s a very aggressive form and dangerous to imneo-supressed kids especially and could potentially damage Garrett's heart.  The doctors have said it isn’t in a sepsis state, though he does have infection in this blood.  His white count more than doubled and he’s on three very specific IV antibiotics to help him fight this.  If all goes well, in a best-case scenario, Garrett might be able to come home within a few weeks with a PIC line and we’ll change his IV’s at home.  We’ve done it before and he heals so much better in his own bed.

The past few days have been a whirlwind, at least it seemed like it.  It started with Kathy trying to get in touch with me in the middle of the night while I was on a man hunt for a guy who shot at a rancher out east.  Within hours, we were in an ambulance headed to Denver.   At times the hours have drug on like watching paint dry, but for the most part, it’s a speed-read through needles and IV’s, procedures, x-rays ultra-sounds, suction tubes, alarms, nurses, doctors and coughing fits that bring him to tears because of the pain it causes.  They had to replace his IV tonight because the other one quit working and now the new one is giving us problems already.  It seems inevitable that they most likely will have to put a PIC line in tomorrow.  Surgical procedure #45 is just around the corner.

Garrett was able to get some sleep Thursday night, finally.  I know this because I watched him sleeping.  I watched him in slumber land and secretly wished I hadn’t missed that exit because I wanted to join him there.  Just wasn’t meant to be for the time being.  But I was glad he was finally there.  It’d been many hours of pain for him before he could get a temporary reprieve.  At nearly 15 years old and 135 pounds, he’s hardly the little baby warrior I used to write about, but when he’s hurting and scared, as life becomes uncertain during these all too frequent critical hospital stays, he is still my little boy and he needs daddy to hold him.  We just don’t fit on the hospital bed together like we once did.

About 1am tonight Garrett woke up in pain.  He’s hurting pretty bad but doesn’t want anything stronger than Tylenol.  He’d been having a nightmare earlier and it broke my heart.  I was really hoping the nightmares wouldn’t come back this time.  As he woke in tears, he said “daddy, I just want to go home.”  There’s a lot of this journey that hasn’t seemed fair, but I’ve always told him that victory awaits the prepared warrior and Christ promised us that the road to Paradise would be tough here on earth.  He’s always warrior’d up; cowboy’d up and put on his game face.  He gives his heart to God when he’s awake and tries to fight the best he can, but sleep is the one escape from the pain and fear that he could always look forward to.  When the enemy follows him into that place of peace that truly isn’t fair.  I guarantee, though, that our Littlest Cowboy Warrior (who’s not so little anymore) will bring his best into the fight tomorrow.

As I’m looking out the window again right now, watching another spring storm roll in, I’m lost in silent prayer for this chapter to pass quickly and get him back on the ball field.  He so wanted one year without hospitals interrupting his baseball season.  When more test results come back, what a great Mother’s Day gift it would be to get them with great news. 

God bless you all and thank you for your continued prayers and support. 

JD

It's a '1'...and That's a Win!!

It’s a ‘1’….and that’s a Win!

We got the call and it was good news!   Garrett’s pathology report came back a “1.”  Scored from 0 – 4, live “bad” cells are scored with 0 being cell free and 4 being life threatening.  In July, we were a ‘3.’  This means that while bad cell this exist, we’re killing them and the prognosis is good for them to continue to die off after all the treatments.

It’s funny how you can really stressed that sometimes don’t realize it.  Sleep has not come too readily this week.  The little gerbils in my brain just won’t stop running on that d@mn wheel.  Last night they must have had some Red Bull or a pot of coffee, because those little devils ran their legs off. 

I laid with Garrett three different times throughout the night, but he’d keep waking up.  Partly from the pain at the incision cite, and partly from the worry he refuses to admit.  Kathy tried to sleep but it was fitful. 

Yesterday was fairly uneventful.  The day of the biopsy always seems to go relatively smoothly.  The last few days Garrett was wound like an 8 day clock and the night before he, Jessi and his “brother from another mother” Gavin, played in the pool and ran up and down the halls of the motel.  The morning of he stayed cool, flirting with nurses and doing pushups every so often to make sure his veins were open for the needles.  It really wasn’t until just before we wheeled him into the operating room that the fear, stress and fatigue finally took over.  My 14 year old not-so-little man fought the tears that eventually found a way down his cheek.  Kathy kissed him and asked him what scared him most, and he replied that he didn’t want to be in rejection any more.  I sang softly to him, “Jesus is calling” until he fell asleep in the O.R., again claiming that first tear as my own.  It’s our ritual and we’ve replayed it 35 times now.

He didn’t want any more hospital stays…no more treatments…no more chemo…no more picc lines…no more being away from home…no more serum sickness…no more having to pretend that ‘this’ is normal…no constant reminder that something was trying to kill him.  He needed a break.  We all did.  God knew that and responded His merciful way.

Normally the “day after” phone call comes to me.  I’ve designed it that way.  I want to be able to temper the news and relay it to Kathy in a “need to know” but not so “hospital-eze” flat and sterile manner.  Today, Kathy got the call.  It was good news, so they called her first. 

She broke down yesterday when they came out after surgery and told us Garrett’s heart looked good.  The pressures were better than a month ago, but we wouldn’t know the whole story until the pathology report.  She’s had so many nights of crying in her sleep, wondering if her baby boy would see another birthday.  She’s witnessed the pain he’s endured, the mental torture and the steadfast drive that keeps him pretending he isn’t scared.  She carried this beautiful living miracle for 9 months and has a connection that only mothers understand.  It’s the not knowing that is the worst, especially when everything we’d expected the past several months has turned out to be wrong.

Today the tears flowed again, even from me unexpectedly, as months of prayer, worry and hope consumed much of our time and energy.  Tonight, we celebrate life.  We celebrate the incredible mercy of our God and the unending love we don’t deserve.  We joined together on our knees in front of the Alter of our Lord and gave thanks for our many gifts. 

Tonight Garrett is bouncing around like a new puppy.   He is so happy and you can see the weight lifted off.  He told me that it’s hard to believe we don’t have to head back to the hospital again in the morning for more treatments.  While we’re still waiting for a few more test results, we do know that the T cells are dying, and that is a victory!  The relief is incredible………

Thank you all, too, for your undying support, love and prayers.  We are truly blessed.

August 3 ~ Feeling Better

I know it’s been a few days since I promised an update, but I guess I just took a break.  We’re doing well and Garrett is feeling so much better since one week ago.  The turnaround came Friday night.

On Monday, we got paroled back home where we could all sleep in our own beds.  I can’t tell you how much that does for the morale in the Ross Tribe.  After spending nearly three years of his life living away from home because he was sick, any time we can come home from a stint in the hospital is amazingly sweet medicine.

Garrett had a few tough nights last week, with Wednesday being the topper.  I went back to work that day while Kathy and the kids headed back to Denver for a checkup on Thursday.  By bedtime though, Garrett was again in so much pain that I could hear him crying in the background as Kathy called me, scared for our son, and said he needed me there.  Well I whipped and spurred to get there as quick as I could, thinking they might be in the hospital by the time I arrived.  Fortunately we didn’t end up in the emergency room, but it was a roll of the dice.  He finally fell asleep around 330 am, and by 730 we were in the Cardiac Clinic.

The serum sickness that Garrett’s being fighting as a result of the chemo needed to fight the rejection was being addressed through some other medications.  Unfortunately, those medicines also have some side effects and the combination made him sicker.  On top of the serum sickness, he got severe migraines.  The kid hurt everywhere.  While not extremely dangerous to his heart, it made for some very long days and nights.  We’ve addressed those with another round of meds and finally are seeing lasting relief.  The past few nights have been really good and he didn’t wake up in pain last night at all.  Praise Jesus!

He’s got more clinic visits in store and if all goes well until then, they will let him start school on time.  The lymphocytes are wiped out from the treatments but he still has some other white blood cells on board to help fight common infections.  He’ll just have to be very careful.  One of his teachers came by to visit today and the school is ready to help in any way they can.  Our support system continues to astound me, from friends and family to schools and strangers who’ve heard and are praying.  We are so blessed.

The kids have spent the past few days just hanging around the house and healing up.  Jessi adopted a couple of barn kittens who lost their mom, so the kids have been nursing them along.  Their eyes are just now open so it keeps them pretty busy making sure the babies are fed frequently and loved on.  This is the type of rehab that hospitals just can’t provide.

Garrett’s attitude continues to stay very positive.   Reality strikes again Tuesday as we head back to Denver for a checkup and meeting with the transplant team to see what steps we now need to take. Garrett has been on such a high lately, I’m really praying that his morale continues to stay good. When we know more, I’ll be sure to write.

We continue to be blessed beyond belief and the kids especially received a much needed reprieve from the constant uncertainty and fear, just by being home.  It was a trip that only days before we could only dream about. See, dreams do come true!

I’m most grateful to God for keeping us strong through this journey, and for the powerful team of prayer warriors who continually call on him.  The prayers work, and while the answer isn’t always what “we” think is best, we’ll defer to His perfect plan and ask for the grace to accept His will.  God bless you all.

JD

July 27\28 Battle with Serum Sickness

You know what I’ve learned?  I’ve learned I don’t know a daggone thing!  Every time I think we’re getting ahead in this fight, a counter attack somehow slips through the sentries and hits us hard.  I’ve learned that we can never take anything for granted.  I’ve learned not to let my guard down.  Ever.

Friday night went pretty well.  Maybe a little too well because it lulled us into a false and premature sense of comfort.  Garrett was almost to the point of being giddy on Friday because we were three days out from his last chemo treatment and thought the soreness and little rash he had was going to be it.  In his words, it was  “nothing I can’t handle.”

The serum sickness he experience in 2010, which was so severe it required additional hospitalization, has been haunting him since we were told they’d have to use ATG again.   ATG (ANTI-THYMOCYTE GLOBULIN) is an antibody that suppresses the immune system, preventing transplant rejection.   What happens with serum sickness is that the molecules lock together and get deposited in nerve endings, joints, bones, skin....you get the picture.   It causes extreme pain starting with the extremities.  Steroids counteract that, but it takes time.  The symptoms mimic meningitis so sometimes it’s hard to know the difference.  It takes about 14 days for this to run its course.  The result is a child in so much pain it’s hard to watch.

Yesterday morning he woke up with a little more rash and a sore wrist and finger.  His finger was so sore that we splinted it during the day because it hurt just to move it.  As the day wore on, he got more and more lethargic.  He said he was just tired.  By early evening, he was feeling very ill.  By 8pm, he was having trouble walking.  The rash was covering his body, hid lymph nodes were swollen and he was running a fever.  His face was the color of bad sunburn.  His arms, shoulders, neck jaw and groin hurt so bad he had trouble doing anything but lying down.  That was the start of a very long 24 hours.  By 10 pm he was crying from fear and pain, then getting mad for crying.  I paged the on-call transplant coordinator and we discussed admitting him for IV treatment of the serum sickness.  But Garrett is so afraid of the hospital that we decided to try oral meds.  They called in some prednisone and pain relief meds to a 24 hour pharmacy.  There we were in the middle of the night buying medicine and hoping it would kick in.  

With the help of the pain killer and pure exhaustion, he finally fell asleep about 2 a.m.   Sleeping fitfully, but sleeping just the same, until the pain woke him up at 430.  I was with him, like so very many nights before.  I was playing Kenny Loggins’ lullaby songs for soft background music.  The same ones we listened to when he was but a few weeks old in the Cardiac Intensive Care Unit at the old Children’s Hospital.  As I was watching him sleep and wishing so much that I could trade him places, I was praying that I could take his fear and pain.  I know God is watching.  I know He’s in every breath.   Yet I find it difficult sometimes to understand why Garrett has had to endure so much.   He’s a good boy.  He never has asked for someone else to have to endure this.  He just wanted to be a little boy and do what boys do.  It’s easy to talk about being a “warrior” and making sure we “cowboy up,” but little boys shouldn’t have to, really.  Still, we try to do that.  He met the pain of needles and separation from his momma when he was but a few minutes old.  Since that moment he’s been stuck, jabbed, poked, prodded, cut, wired, siphoned and has dealt with so much heartache and fear.  The whole family has.  Garrett was trying not to cry and with tears running down his face told me he just wanted to go home.  We all do. So much separation from home over the years.  A man with any character would give anything to remove this burden from his family.  I would.

I love my family so much but I’ve made many mistakes through the years while trying to “make up” for the pain they’ve endured.  Everyone has challenges and the journey we’re on follows a trail meant for us.  I realize I can’t change that course, but I can make sure we stop and picnic along the way to give them reason to stop and enjoy the beauty.  That is where my joy comes from.  There were so many times I've stayed awake for hours just to watch them sleeping peacefully and relish those moments when they aren't afraid of anything.

Tonight, Garrett’s finally getting some much needed rest.  He’s not in a lot of pain, thanks to the prednisone and pain killers kicking in.  We all gathered as a family and read scriptures and prayed our night prayers.  The requests remain the same.  But we also thank God for His mercy and the support system we have.   First thing in the morning, we’ll be in the cardiac clinic and determine our course of action from here on.  Once again, we’re claiming victory because we stayed out of the hospital so far.  I’ll take the night watch again and spend some quiet time with God.

There are so many of you who are supporting and praying for our little warrior. God bless you all and thanks again for caring. We can't take the edge off the pain on our own.  We’ll continue to be in God's tool box to use as He needs to accomplish His perfect mission. 

A few years ago I heard a song that I swear was written for and about our situation.  It speaks as if it were my very own voice and words.  I listened to it alone last night, and will again as soon as I post this. 

http://www.youtube.com/watch?v=_l09AJ9lXSE&feature=related

Thank you for your prayers.  Thank you for taking the time to care.  It does not go unnoticed. 

God bless you.

JD