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