8/5: A Trip to the Emergency Room

Today's start was ok. Leo and Granpa went for their usual walk and we thought our time at The Clinic would be short, since they now want me to do everything independently. As we were about to leave, I picked-up Leo from his stroller, which accidentally tipped over. I didn't think much of it until my Dad told me to look at the pump, which was on the floor, and the IV tubing, which was pulled tight. Leo didn't think much of it either and we headed out.

We were at The Clinic first and did the usual weigh-in, etc. At about 8:55am the pump kicked-in for the last dose of antineoplastons at yesterday's dose of 155mL of A10 and 12.5mL of AS2-1. Moments afterwards, when Dr. DeLeon walked-in, Leo was screaming in pain and pointing to his port. We called nurse Louise and explained to both what had happened. I lifted up Leo's shirt, they looked at the dressing without doing or touching anything, and said everything was fine but we should turn-off the pump. We basically thought that little accident at home just stretched things a bit and possibly pulled-off some of the tegaderm covering the needle and port. Nurse Louise said she was too busy to help at that moment and that we would have to wait for some time for her to have a good look, but she didn't know how long -- maybe 15 minutes, maybe 3 hours. So we left knowing either Leo would be ok or in an emergency room.

Back in our hotel I flushed Leo with saline and heparin and he just smiled at me. I thought we were in the clear. It took me about 20-3o minutes to set-up the bags and pump, which I then promptly connected to Leo to start today's treatment of 165mL and 12.5mL. As before, it took Leo just a few seconds to start complaining. I immediately disconnected the pump to calm him down and phoned the on-call nurse, Louise. What to do? Go to he closest ER, at Memorial City Hospital.

Leo was no longer in pain, but obviously something was wrong with the port, Huber Needle, and G-d only knows what else.

The ER was empty, except for a toddler, and we went in within about 10 minutes. Dr. Cassidy and nurse Patti looked at the dressing and without even touching it immediately noticed some puffiness and swelling and ordered an X-Ray. Unfortunately this hospital doesn't really have much of a pediatric department, so we started thinking of heading straight to Texas Children's Hospital. Here's what the X-Ray showed, with my annotation:

The X-Ray shows that the Huber Needle is not in the port, which is invisible to X-Rays. So Leo's pain came from the antineoplastons being pumped into his chest, not into his veins! Fortunately this didn't turn-out into the worst-case scenario -- at least not yet. Dr. Cassidy said they would take-out the Huber Needle and Dr. DeLeon, on call, confirmed and said not to put-in a new one until Monday. Dr. Cassidy refused to estimate how long Leo would be swollen and only nurse Patti was willing to take a guess that it would take about a day or so for the "stuff" in his chest to be absorbed and relieve the swelling. We left Memorial City ER about an hour after we got there, which has to be record timing. Again, Leo wasn't in any pain and demanded Chicken McNuggets, which we reluctantly provided, since there'd be no sodium pumped-into him until Monday and he must've had a hankering for nitrates and other chemicals. I told him this was his last batch until he was able to go out and buy them himself.

After we returned from the ER, Leo was hungry almost the rest of the day, but didn't take a sip of anything to drink. I guess the thirst brought-on by the sodium of the antineoplaston treatment was gone and he preferred to eat instead of drink. And eat he did. He also gave us one heck of an "attitude" today, which hopefully means that he's generally ok and this was a minor setback, but a big scare for Granpa and me.

In a second-of-its-kind, Dr. DeLeon called a few hours later to follow-up. (Dr. Kroin, Leo's pediatrician, was the first doctor to do this.) We still have to go to The Clinic tomorrow where the nurse will have a look and possibly put in another Huber Needle if there's no swelling, to get him back on treatment. This seems to be the best-case scenario, but I'll settle for second-best on Monday.