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.