Up and Down

Returning back to Thursday, the day of the surgery, Declan did well that afternoon and into the evening. We were exhausted from the past few days and were hoping to get a good night's sleep. The PICU has a "parent's room" you can reserve. A pair of single cots generally provides a restful night's sleep away from the beeps, alarms and nurse traffic in and out of your room.  The room was supposed to be reserved for us that night and when we asked for the key, we learned somebody missed the memo and the room was already occupied. Tired and frustrated, we returned to our all to familiar, head to toe position on our couch. 

They say the roughest night after these surgeries is usually the first night and they weren't kidding. Around 2:30/3:00 AM or so Declan took a turn for the worse, his heart rate spiked, his blood pressure began rising, and his oxygen saturation dropped to the 50's and below - not good. The next few hours our room was filled with doctors and nurses adjusting doses, trying different medications and manipulating Declan's airflow. I think I was most scared when one doctor's sole job was to call out his oxygen saturation, "53, 51, 47" I started holding my breath. "49, 52, 48" I would be lying if I didn't say that I began wondering if this could be it. Declan was clearly agitated and in pain, he was squirming and restless.  I heard so many different names of drugs tossed around that night, so I don't recall which one did the trick. But is was something for pain, anxiety and also  breathing nitrate oxide that brought him out of it. "55, 62, 69' I could breath again. The next 15 minutes or so were silent. About 15 pairs of eyes were glued to the monitor, watching to see if his numbers would stick. Nobody said a word. Neither did anybody want to make any noise that might disturb him from his comfortable rest. I believe it was around 5 or 5:30am or so when he settled in the 80's. We learned that when Declan gets anxious or irritated, he bares down and it restricts the flow of oxygen to his lungs. That in turn prevents the proper saturation of O2 in his blood. The nitrate really did the trick, he was comfortable and resting. Looking back I think I was glad we were sleeping in Declan's room that night. You not only gain an increased appreciation for the medical team, but just watching him fight-the experience- brought Tammy and I closer to each other and bonded us tighter to Declan. 

Unlike the previous night, Friday was much more calm. Declan's stats stayed where the doctors hoped. Much of the day was spent weening him off of the Nitrate Oxide. he went from 40 ppm down to 5ppm by the end of the day. The surgeons also removed the two draining tubes from his stomach/area. Thankfully, it was an uneventful day, Declan could rest and recuperate. I think the nurse wished his bowel movements weren't quite so healthy, but he was doing much better. As I thought about the contrast between Thursday night and Friday, it's amazing how different we felt. We went from feelings of sheer panic, to confidence after hearing the doctor's comment, "he's doing great, the first bit is always bumpy for these babies, but he's looking good". Our spirits were also lifted by a couple of visits by some friends. Nothing like food and friends to help lift you up!

Last night they continued to wean Declan from the nitrate, and this morning he is completely off of it! He still breaths a high concentrate of oxygen to keep the blood vessels in his lungs dilated. The nurses removed his central line from his neck today as well. The plan is to continue to try to ween him off one thing at a time to try and isolate what might (potentially) cause his O2 to drop again. So far, Declan is responding well. He has been such a little trooper. His swelling decreases, day by day, and he actually gave me a half smile. This morning as I looked into his eyes, I fought back my own tears. When you look into his eyes, really look; you can see he is back.