Today was not a fun day. After a very rough morning, Samuel was airlifted back to Charleston on a helicopter. He will be okay, but our hearts are hurting. Samuel isn't sleeping in the next room tonight and the hum of the oxygen concentrator has temporarily gone silent. We miss him.
Yesterday, Samuel started to look a little puffy. I don't know what the medical term would be, but that's what I call it... his little face just starts to puff up a little at a time. It wasn't bad, but worried me a bit because right before his last event he was really puffy (at their birthday party). It's been a busy couple days, so he went to bed early... we hoped that might help. At about 3am I woke up for a routine diaper change and suction - he had lots of secretions and the puffiness seemed to be getting worse. I started to get that feeling that something just wasn't right.
Around 7am we made a 911 call - Samuel started coughing, turning colors, couldn't get his breath, and required bagging. Bagging is when you use the ambu-bag, which is connected to an oxygen tank, to manually give him supported breaths through the trache... kind of like CPR but without the chest compressions. It's a bad sign if you have to be bagged. He seemed to pop back after being bagged - still puffy but color was good, breathing slowed to a more normal pace, the sweating stopped. Good stuff! We decided not to go to the ER. Around 8am we called 911 again - once again we bagged, but this time it didn't seem to work as well... plus, being bagged twice is definitely a bad sign. This time we went to the ER, where we stabilized and waited for transport to Charleston. It took a long time to get him comfortable, and that was with a few additional meds, so the decision to airlift was made. The team from Charleston was there in no time with hello's for Samuel - he has made entirely too many friends while in the ICU's :) (Thank you so much to all of the EMS, Fire Dept, and Hospital teams who helped us today, too!)
We made it 48 hours... we had almost a week at home. We are so grateful for that! But now I think it might be even harder not having him home. Before, we had a room ready and waiting for him... but now, it's his room, and it's empty.
They are doing lots of test to try and figure out what happened... some will come back in 48 hours, some not for 7 days. I think we're looking at 1-3 weeks back in the PICU, but that's just a guess, I have no idea.
Once again, our hopes are high! Now we know what we're missing... we can't wait for Samuel to come home again :)