Friday, March 5, 2010

disappointment and hope

Noah has an appointment scheduled with his pediatric GI doctor on March 9th!  Our pediatrician told us about a month ago that he hoped the March download (from the apnea monitor) would show significant improvement with the increase in medication and hopefully Dr. M would discharge the order for the monitor.  We have been and still are looking forward to this appointment with Dr. M!  However, home health downloaded the monitor on March 2nd.  I received a call from the pediatrician's nurse Thursday, the 4th, telling me that dr. V wanted to make sure we are keeping Noah on the monitor and not to change anything until we see dr. M.  I asked her if she received the results and she said yes, but she wasn't able to interpret them.  I asked to be transferred to someone who could and she did.  I was told that Noah had 8 central apnea episodes that lasted over 16 seconds and 1 that lasted over 20 seconds.  This is an improvement from 12+ episodes but I am not sure what dr. M. is going to say.  I just get so frustrated and disappointed because I am sick and tired of the monitor, but at the same time blessed that this technology is even available.  Noah has spots where the electrodes go that look like they are forming calluses from the rubbing and constant pressure.  Hopefully those will go away.  I am not trying to have a pity party and I know that every family has their own hurdles and ups and downs.  This is our little hurdle and in the grand scheme of things, it is small.  He is safe, he has a monitor that alarms if his breathing stops, and nothing will happen to him.  As his mother, I want him to be able to sleep without a tight band around his chest, alarms going off, cords going everywhere inside his crib, etc.  I am also selfishly ready to get a full nights sleep!!!  He is now waking up every three hours (like a newborn).  If I let him cry it out, his alarm goes off for tachycardia.  I am just praying that when we meet with the doctor on Tuesday, we will get some answers.  I have plenty of questions and concerns that I hope will get answered.

1 comment:

  1. Oh wow. It has to be scary for him and you. I can't imagine waking up to all those things. Praying you both get a good nights sleep soon.