Rough Day

Bobby had a hard time stabilizing over night. The nurses were on the phone with his surgeon most of the evening, trying to find the combination of medications and mechanical interventions to keep his blood pressure, oxygen saturation, and heart rate on track. They succeeded around 11 pm and we had a good night from there.

He was extubated this morning. (Extubate = removal of Bobby's breathing tube). Or at least, they tried to extubate him. His airway was swollen from having had the tube inserted twice in just a few days. It was so swollen that he couldn't push air in or out.

It was very scary. Nanny Beth and I were watching from the glass window that separates his room from the hallway. Valerie was home working because he'd been so stable that we didn't think we both needed to be here. I saw his oxygen saturation fall to 39%, which is a crazy low number. Then we had to leave the area completely because they didn't want us there for the reintubation (re-insertion of the breathing tube).

We stood outside of the ICU, waiting. His room is next to the ICU entrance, so I could sneak peeks as people walked in and out of the door. A crash cart showed up. Multiple nurses and doctors showed up. Very scary, so rather than go crazy, I walked a few paces down the hall where I couldn't see all that commotion.

Then, while Beth was finding a phone to call Valerie, a woman who I knew to be a social worker walked up to me in the hallway. She introduced the person with her - the chaplain on call. I freaked out. The stupid social worker held my arm, asking if I was alright and asking what they could do. After a long paus, I blurted out, "did he die?". They looked puzzled. Apparently they automatically get paged when additional staff are called to the room. "Don't do that," I told them. "Why did you get called? Is he in serious shape?" The chaplain managed to exit gracefully. I wanted to slap the social worker.

In a few very long minutes the APN came out and told us that the reintubation was successful. They are confident that the issue was the swelling caused by the tube, not a problem with the his lung or heart function. He had an echo to confirm this later in the day.

So, we're back on the tube. This time its down his nose, which lets him put stuff in his mouth and overall seems more comfortable. He's on steroids for at least 24 hours and the new extubation will be tomorrow or, more likely, Friday.

This time, they are going to have an ENT present to take a look at his airways. Besides the swelling, the upper right lobe of his lungs collapsed again. Since this has happened twice now, they wonder if there is something wrong with the physiology of his airways. There's nothing to be done for it, but it will help them extubate more carefully in the future. So, he'll have general anesthtic for the next extubation. For good measure, the ENT is going to check to see if he needs ear tubes (almost all kids with DS do) and then will slip those in during the procedure.

Bobby was originally scheduled to have an MRI later this month for his eyes. He has nystagmus (more commonly called a 'wobbler' by me). One of his eyes crosses some of the time. Well, one of the causes can be De Morsier syndrome, which is some hideous disease impacting the mid line of the brain, including the pituitary gland. Its not likely that Bobby has it, but they need to do a sedated MRI to check. After all of the fun today, the last thing we want is an additional sedation and intubation. So, the doctors have been nice enough to move it up and do it tomorrow, while he's intubated anyway. One less trauma for Bobby. One less day sitting in the surgical waiting room for us.

Post reintubation we had another round of low blood pressure and desaturation. But he's stable now. They are going to keep him largely sedated between now and tomorrow, which is good news. He comfortably slept most of the afternoon away.

In the meantime, my heart rate has gone back to normal post the visit from the chaplain. We had Nurse Kyle today, who is one of our favorites. He is very knowledgable and enjoys caring for Bobby. The ICU attending pronounced Bobby the cutest kid on the floor. According to the nurses, it is quite rare for him to make such a remark. Nanny Beth stood on her feet for 8 hours holding Bobby's hand. Or, put another way, Bubs is surrounded by people who are very, very loyal and dedicated to him.