So, the last few updates have been short with nothing to report but this week was another story...
Mike and I had went through a heart wrenching experience with our baby this past Tuesday. Two hours into his infusion our nurse noticed Trey was having an irregular heart beat and called the nurse manager into our room to confirm her suspicions. Within moments my mind went into a tail spin with thoughts of the possibility of our babies heart having a reaction to the medicine. "He's so little, so young, this drug is so new that no one really knows all the side effects, what kind of damage is this doing to my babies heart?"...as you could imagine, those were the thoughts going through my head when all of the sudden the infusion was called off, and medical staff started pouring into his room along with machine after machine. A 12 lead EKG, an echo cardiogram and a chest x-ray were ordered and began as the drug rep. in California was called, our geneticist showed up and an attempt to confer with the "main doctor" in Australia was made on how to proceed from here. The medical team had three possible reasons as to why this was happening to our precious baby;
1. was the tip of his port "tickling" his heart ?
2. was he in fact having a reaction to the medicine ?
or
3. was this VPC - ventricular premature contractions, where the lower chamber of your hear beats too soon, which is a common happening for many people and have nothing to do with the infusion or MPS?.
You can bet Mike and I were silently praying for option #3!.
Twenty minutes after the infusion was stopped, Trey's heartbeat returned to normal with no heart arrhythmias. The preliminary test results showed that his heart was not in stress. The EKG was normal, the echo cardiogram was scanned over with no danger to report of (it would be read by the cardiologist the next day), the x-ray results we not available. After taking into consideration all of the results at hand and conferring with the other medical professionals, our geneticist decided that we could continue with the infusion at half the rate which meant the two hours we had left would now turn into four hours.
NOW I could report that no news is good news and that our silent prayer was answered. The next two hours went so well that when the doctor called to check on Trey he determined that we could infuse at a faster rate but still not the rate he was at when the arrhythmias were noted. This new news meant that instead of two more hours, only one more to go. We finally made it home at 6:15pm and as you can imagine we were both physically and mentally exhausted, to say the least!
The nurses that ran the tests on Trey confirmed my sentiments about our little man, they all said what an excellent patient he was...he's our SUPER TROOPER, just check out the pictures attached!!!
We were hoping for a call today with conclusive test results but no such luck. Maybe the good news of the final test results will come tomorrow (4/17) as this is Trey's 3rd Birthday. What more perfect day for good news than on his day of birth? :o)
With love,
Mike, Cami and da' boyz
