Have you ever put your children under sedation? I like that the hospital allows a parent at the bedside to help the transition from prep to imaging under sedation easier on the child. As they roll Reiss to the room with the MRI scanner, I notice the scenery change. The bright, cheery walls covered with St. Louis Cardinals photos and sports graphics fade away as we roll through “staff only” doors into stark-white, cold hallways. The worry in her face increases, because she notices the change too. I help Reiss feel as comfortable as possible through cuddles and conversation as she scans the room to find new items and new people. Her grip on my shoulder tightens and you can tell she is scared. Reiss continues through the fright, talking with the hospital staff throughout the process. The nurses’ and anesthetists’ genuine bedside manner is almost rehearsed at this point, they do this so many times throughout the day, but they are not condescending or fake as they inject the sedation meds into Reiss’ iv. Reiss keeps talking with one of the anesthetists. “This is giving my arm a drink?” she says as the meds start to kick in. At first her little body tightens like all muscles are flexing at the same time. Then everything relaxes. Her head softly falls on my shoulder and she exhales a soft sigh. I lay her sweet curly-head on the table and give her a little goodbye kiss. The hospital staff is still cheering as they kindly direct me out of the room, smiling along the way.
I always leave the room uneasy. Yes, this was the best way this could happen. Yes, she is in good hands. Yes, she needs these tests and procedures to move forward. But it is creepy and unsettling. When I have nightmares of losing Reiss, it looks like this and I don’t like seeing even a glimmer of it in real life.
Our next steps
Reiss will be under sedation for about 2.5 hours while they complete the MRI and echo. We will not speak to the doctors today. They need time to review the material and will give us a call after doing so early next week. At that time, they will discuss with us options for surgery dates, as well as which date will be best – Aug 10 or 26.
We will also ask for the imaging files on a disk before we leave so we can ship them up to Children’s Hospital of Philadelphia to see what they think about Reiss’ situation.
We saw more blood yesterday and today. We have been telling doctors that Reiss’ condition has been better lately. Feb-April, she coughed blood every 7-10 days. May – July, it was more like once a month and the volume was greatly decreased. However, last night and this morning she coughed blood clots like we haven’t seen since March – multiple quarter-sized clots you can hear clogging her airways as she struggles to cough them up. Hopefully the blood will subside over the weekend..