Day +2

What a long day it has been! After a late nap yesterday evening, Max stayed up until 12 am. What a surprise for Mike when Max was up again at 4 in the morning! He fell back to sleep at 6, but only for 45 minutes.

All of Max's day has revolved around managing his horrendous diaper rash. I will try to explain without grossing any one out too much. His bottom is completely raw and bleeds when you wipe it. The poor kid poops a little bit every half hour or so, and as soon as that happens the screaming begins. He screeches all through the diaper change too. He has been taking doses of morphine for the pain, and we are considering a continuous morphine drip for him. We're now trying a new cream and spray as well as "oxygen treatment." Max's respiratory therapist recommended blowing oxygen on his bottom to help heal the wounds.

In between all of this he is doing pretty well and is in good spirits. He continues to wheeze a bit and is still eating and drinking. We've been warned several times today that this will probably stop all together. We are just hoping Max can avoid all of the mouth and gut sores.

Well, I just had to stop writing for a few minutes to call the nurse. Max stepped on his lines and pulled them apart again. Luckily, Auntie Katie noticed right away and we clamped them off. Now he is drinking some apple juice and hopefully he will fall asleep soon. Auntie Katie is rubbing his hair (which, by the way, has not fallen out yet) He needs some rest.

Mike, Grace and Katie went to the Children's Museum in St. Paul today and had a great time.

Thanks for checking in on Max!
-Margaret