From the Peds Intensive Care...

Oh, I don't want to be here. Not because the ICU isn't beautiful (it is). Not because the nurses aren't amazing (they are!). Not even because there is a big glass wall with lots of people looking in (I like people). But because this means my sweet boy has taken a step back. A step I would not wish on anyone.

Saturday was about getting Benjamin's pain under control. And the doctors were able to do that with great success. Wade describes Saturday as an A+ day.

Saturday night went well at first...both Benjamin and I were able to sleep. Until 4 am, anyway.

At 4, the Respiratory Therapist came in -- see, the surgery was long, and Benjamin is a non-ambulator (he doesn't walk), so Respiratory gets involved to ensure he is keeping his lungs clear. He got very stressed during these exercises and ended up with an oxygen mask on his face blowing air to help him breathe easier. He finally went back to sleep around 6 am. Wade and I have discussed this over and over (and over) and really don't know why he got so agitated. My best guess is that the exercises were stirring up some congestion that he was then having a hard time coughing up.

Because we thought that incident was stress-related...we proceeded with the post-surgical plan for yesterday -- get him up and in a wheelchair, more breathing exercises and try to eat.

He kept getting agitated...saying he wasn't getting enough air. We kept assuring him the mask was blowing...and so the day went. Until about 3 p.m. yesterday when Benjamin was sleeping and all of a sudden his breathing changed and became extremely labored. His eyes flew open with the utmost panic and his oxygen levels began dropping.

We tried to calm him down, urging him to take deep breathes. Then Wade stepped out of the room. I immediately began to hear a page going out over all the loud speakers but really didn't make the connection until people began running into Benjamin's room.

The nurse had called a CAT TEAM alert....(Critical Assessment Team)...as the first two people came running in, Wade whispered to me, "It's a pre-code." I have walked this medical road with Wade from the beginning, so I know what "CODE" means....it isn't good. My heart began to panic, my legs to tremble and I just wanted to shout to everyone to get out. But then looking at my blue-lipped boy, I knew we needed them. Benjamin needed them.

Within minutes, they were giving him a breathing treatment to stabilize him, taking a chest x-ray and unplugging everything and starting to move...as we ran down the hall toward the PICU, I was too scared to even formulate prayers....but knew even then that scripture assures that in moments like that, the Holy Spirit will interpret our groans to the Father! I was counting on it.

Within minutes of getting to the PICU, the team had him breathing more comfortably with a nasal oxygen. It was evident to all around us that he had probably been starving for oxygen all day. For the first time, he was breathing easily and began to rest.

I won't say it was a restful night. Wade and I are shaken to our very core. We took turns napping on the little sofa in Benjamin's ICU room while the other one sat by watching him breathe. He has a new myriad of monitors....and though they scare me to death, I am very thankful for them.

His chest x-ray this morning looks better. But he still has a big hill to climb....still too much fluid there, and diminished breathing capacity.

He did, however, eat this morning for the first time. My good boy wanted a biscuit and Peaches! He is resting now and hopefully will for the better part of today.

We had hoped to be home today or tomorrow. That is obviously not going to happen. Will you pray that we get there Wednesday? My mother was scheduled to leave on Wed....will you pray we can make arrangements for her to stay longer?

And will you please continue lifting up this sweet boy -- they are decreasing his pain meds today. We DO need to start lowering those but don't want him "stressed" from pain when we need him breathing. Pray for wisdom for his entire team (so many people involved now that I can't even think of all their names. I am tired.)

Thank you, dear ones. We all felt better last night once we were able to send out some prayer alerts. Your faithfulness to pray for us is more than a blessing. Thank you.