Alex's Story, Part III

There has been so much happening the past few weeks that the details are getting fuzzy, but here goes...

As I've already said, the MRI results trigger some new medications (steroids, blood thinners) that begin to work immediately and well. Jason and I start noticing improvement so fast and Alex's fever stops on Thursday never to return, hallelujah! That marks 12 days straight of fever for Alex that was finally finished.

On Thursday night I had really weird dreams. At one point I was going into a 7-11 and there was nothing on the shelves, but the word 'THROMBOSIS' was plastered on the wall above the shelves. I also kept hearing the word being said out loud throughout the night, like a song you can't get rid of. Jason also kept hearing that word. Thrombosis = blood clot. On Friday they did another CT scan which showed that a piece of the clot had broken off and caused more damage further down the artery. A discussion with the pediatric stroke specialist (it sucks that we need those!) ended with him saying that although it looks worse now, the actual visible effects of the stroke would not be much different since the clot moved along the artery it had already damaged.

At this point Jason and I are reviewing the past couple of weeks and marvelling at the timing of this event. Granted, we would never have chosen this. But considering how much it all sucks, this is the best timing. We were supposed to have gone to Vancouver the beginning of August and although I NEVER buy insurance, something told me I should when I booked the trip in March and I listened. Also, with Troy I am now on mat leave, ensuring that I am still bringing in cash every two weeks. Troy is also really portable still, he doesn't need to crawl or run around and we had started keeping him with us in the hospital in the evenings.

The heparin (blood thinners) are being administered by IV drip and are working but the docs aren't happy with the levels in his blood. Apparently heparin is a very 'sticky' drug that will attach itself to anything and everything: the IV tubing, his skin, blood vessels, incorrect cells, etc. This sucks up the heparin for uses other than intended which means that it is not really able to do its job. On Saturday the thrombosis team decides to 'bolus' the heparin twice, which means they will administer large doses and hope that it gets Alex 'therapeutic' which means that the levels in his blood are where they need to be.

The levels are therapeutic immediately after each bolus but drop off substantially within a couple of hours, meaning that the IV heparin is not working well enough, so we switch to injections. Alex receives two injections daily into his thighs. We are still doing this and won't be switching to the oral medication for at least another 2 months. At least the needles are the diabetic insulin needs, very small. And the dosage is not very big. But because he is on blood thinners and aspirin he bruises quite easily and the poor kid's thighs are constantly purple.

Over the next week we slowly begin removing medications and we also begin moving down the hall, away from the acute care room and the isolation room. We even give Alex an immersed bath at one point. It takes two nurses, mom, dad and a whole lot of equipment but we get it done! The next day we take Alex in a stroller out of the unit for 10 whole minutes! He gets worn out pretty quickly but we manage.

We can see now how relieved the doctors are, not just because they look relieved but because the really highly paid specialists don't come by anymore. Alex is finally getting better, his medications are stable and determined and now all we do is wait. Dr. R. also finally starts talking about 'when' we get out of the hospital. After that conversation it hit me how I hadn't heard that yet, that no one was talking about 'when'.

On Sunday of the long weekend, August 1, 2010, the doctor lets us take Alex home for the day and the night. We still must take him back in the evening to get his PIC line flushed but that only takes 10 minutes. We are so grateful to have him home!

That Sunday night marked the first time that all of us had been in the house together since the whole thing began 15 days earlier. Alex was officially released on Wednesday, August 4th after a flurry of consultations, two more ultrasound tests and much coaching by home IV, etc.

Our son was finally home and ALIVE!