A Rough Start

Yesterday, when I typed my previous blog post and described all the possible side effects that Cameron might experience, I had no idea that he would start experiencing them so quickly and go through almost all of them at once.

Within a few hours of starting the medicine, Cameron started to develop a terrible rash.  The redness started on his face and within 30 minutes it had spread throughout his body and developed into large, itchy hives. 

The start of the hives, this got MUCH worse before it improved.

A large dose of anti-histamine help to ease the itching and the rash improved and eventually went away for a short time, only to return a few hours later.  This continued for most of the night.

Cameron was started on a continuous dose of Morphine yesterday, before the start of his treatment.  We knew that he would be in considerable pain, but I didn't think it would start so quickly or be as intense as it was.  Cameron doesn't scream in pain - he has a high pain threshold, but the physical symptoms are hard to miss.  His heart rate started to climb steadily and he began to grunt and whimper from the pain, the Morphine and Benadryl had him very sedated, but even in a deep sleep - his heart rate was over 160 beats per minute.  His continuous Morphine dose (PCA) was increased from 0.3 to 0.6 and he was given a bolus dose of Morphine to try to get the pain under control.  I set my alarm clock to go off in 10 minute increments and pressed the button on his pain pump whenever the timer went off, to give him an extra boost of Morphine.  We eventually managed to get the pain under control and he seemed to relax a bit and his heart rate came down to normal.

Unfortunately, solving one issue seemed to cause another one.  The high dose of Morphine, mixed with the antibody medication, caused Cameron's oxygen saturation level to drop.  At first, it dropped to 93% and he held it steady there for a while, so it wasn't immediately concerning.  Then slowly, but surely, it continued to drop, until eventually it was in the low 80's.  Cameron was put on oxygen support, and initially the plan was to keep him on it for a couple of hours and hopefully he would recover on his own.  That didn't happen!  Almost 24 hours later, he is still needing constant oxygen!

As if all of that wasn't enough, he has also started to run a fever, which has gotten as high as 103.4 Fahrenheit (39.2 Celsius).

The doctors have reassured me that all of the symptoms that he is experiencing are to be expected, but that doesn't make it any easier to watch.  The combination of exhaustion and worry has caused my mind to go to places that I would rather not visit.  Watching my baby struggle to breathe, no matter how "expected" they tell me it is, sends chills down my spine and terrifies me to my very core.  I am thankful for every minute that Cameron tolerates this medicine because I know that he desperately needs to get as much of it as possible, but it's soul destroying to watch him be this sick - and know that it might even get worse before it gets better.  I'm taking it minute by minute and trying to find solace in the fact that, once they do turn the medicine off (hopefully after he has received the full dose), his recovery will be relatively fast and he shouldn't have any long term side effects.