Monday, November 16, 2009

Step Back

Last night was a bit rough in terms of sleep for mommy, but little Chase had a pretty good night. He seems to be taking to his new room on 7C quite well. Unfortunately, it's time for yet another step backwards.

The ENT folks came through this morning and did a flexible scope bronchoscopy on Chase here at his bedside. I was completely devastated when the doctor said she'd need to repeat last Wednesday's procedure to remove some additional granulation (scar tissue) from his throat. I could not believe it. You can imagine the fears and concerns that overwhelmed me when I heard this. There still isn't a clear explanation as to why Chase coded and required CPR after this procedure last week, so I'm less than confident they know how to prevent it from happening again. I am so scared!!! Plus, he'll probably have to spend the night after the procedure -- you guessed it! -- back in the PCICU. This isn't a big deal. What I'm less than excited about is I'll have to pack up our room here on 7C for the night and probably be put into a different room the very next day. ((sigh))

They also put off his swallow study until later this week since he apparently needs to be on one-hour compressed feeds and right now he's on two-hour feeds. I was looking forward to the swallow study because I just have this feeling that he's going to excel at it and that we'll move forward with mouth-feeding by bottle and eventually (hopefully) able to start breastfeeding. So ultimately today has turned into a series of steps back and/or a lack of progress forward.

I know, I know. Everyone said this would happen. I should have seen it coming. But truly, the idea of Chase repeating the bronchoscopy procedure in the OR again has me beyond frightened. What if they can't bring him back like they did last time?? I've been in tears over this all morning. I know God is still here and still is in control of Chase. I know He has a perfect plan for my son and I do believe His plan involves complete healing. He is with us through this journey. But I'm still human, I'm still a mommy, and I'm still afraid.