Long day done at Texas Children’s with a little more excitement than we wanted - Dec. 8

The title should technically say long day finished, but, honestly, by the time we left the med center this afternoon, we were starving and done, just soooo done.  After the 4am wake-up call and out the door before 5, it was in some way good to be first in line at the MRI department, though it still baffles me always why if you arrive at 6, it takes them until 7:30 to start the procedure and that is good time. And today the MRI took a fair hour and a half, leaving us with about 3 hours of bad waiting room morning talk show entertainment and yet more entertaining toddler fit-throwing accompanied by sketchy parenting.  We were grateful Asa did well today as he is still slightly congested from the household flu epidemic, though the anesthesiologist didn’t think he sounded poorly at all.  If he didn’t sound badly before the MRI, he does now.  He’s croaking like a barking frog between flu residuals and the breathing tube they used in the MRI.  Perhaps that will be better in the morning.

We progressed from the world of MRI to wandering and waiting for a few hours in the TCH corridors, waiting to see the eye doctor.  Asa’s left eye has never drained properly since he received heavy doses of the antiviral drug, Cidofovir, when he was so critically ill with the adenovirus after his first chemo.  Though we do see a bit of improvement in this eye over time, people constantly ask us why Asa is crying when he’s not.  Sometimes the eye is pretty normal and at other times, he has tears rolling down his face.  Per the doctor’s report, the tear duct has some scar tissue, but not enough to be of big concern right now and he may just outgrow it over time, so we will wait some more.

You would think that with an eye doctor visit and a MRI procedure involving anesthesia after the flu, that the MRI would have been the problem today, but not so.  Before seeing the eye doctor, Asa was taken back to have an initial short exam and have his eyes dilated (something that we’ve done once before) and then we were sent back to the waiting room for 30 minutes.  Within minutes of the dilation drops, Asa began to turn bright cherry red.  At first we paid no attention because Asa had thrown such a fit and gotten quite red faced and mad while the assistant had put in the drops.  But, after a bit, we realized that this had nothing to do with that.  He was very flush and warm and that the flush was spreading down his chest.  We quickly hauled him back to the office rooms and called the doc in.  It took them a while to address the reaction and by the time they did, it had dissipated (pics below show it going down some - it was redder).  Evidently Asa had experienced a reaction to one of the drugs, Cyclogyl.  I guess never a dull moment for us.  Within 30 minutes, Asa was back to looking pretty normal and obviously, he now has a drug warning on his medical chart – for a drug used at the eye doctor – go figure. 

We thank you for your prayers today and your inquiries.  We are waiting on results from the MRI now.  It is possible to get those as soon as Thursday.  We go back to oncology clinic the following Thursday, the 18^th, to speak with the docs and do blood work to make sure cancer markers have stayed low.  The MRI was to take what is hopefully and prayerfully a final look at the surgical resection bed far removed from the tumor site.  There was some odd scar tissue there last MRI and the liver team wanted to make sure that area looked the same and take a look at how Asa’s liver has filled out the last few months. 

Again, thank you for your prayers.  We are clearly grateful to God today that our incident in the ophthalmologist’s office ended uneventfully.  And lesson learned – yes, you can have a severe systemic and dangerous reaction to a drug put in your eyes.  Who knew? We are grateful to hear good news on cousin Mark’s eyes, too, as he has been struggling with his eyes from chemo treatments, even though he is in remission.  I’m sure he’d appreciate prayer as well. A fun day of seeing Asa walking around silly, half drunk from anesthesia, playing peek a boo around the furniture with strangers.  Grateful day to see long eyelashes, even if that eye doesn’t drain quite right.  And, honestly, most thanks of all to be home in bed with a house full of semi-healthy people, even if they gag and cry when you offer them Tamiflu.  Yay!