Tuesday, December 13, 2016
"I'm sorry Mommy, I'm sorry Mommy, you're right... I can't breathe..."
As one of the nurses and I were just discussing, in the hospital, and especially in the ICU, things can change so quickly...for the better but unfortunately, also for the worse. This past Thursday, Rowan had a pretty okay day. They were able to pull off a lot of fluid via dialysis, he did not require any blood or platelet transfusions, and we were able to stop his insulin drip. Friday, things started to change. He went back on iv pressors to keep his BP up, back on insulin, was pale and lethargic, had a high respiratory rate, high heart rate, and was requiring blood sugar checks (finger or toe pokes) every 30 minutes all day, as well as blood pressure checks (arm cuff squeezes) every 5 minutes all day...you heard me right ... every 5 minutes. He was getting sicker, but he was also getting more and more miserable...and tired. By Saturday morning, he was on 2 pressors (one, at a higher level than he has been this entire stay), a much higher drip of insulin. He received 2 red blood cell transfusions, 2 rapid fluid boluses, stress dosing steroids, and had an ART line placed, but he seemed to be holding his own. He was only on 1-2 L of nasal cannula oxygen for comfort during the day, and was switched to High Flow nasal cannula overnight.
Sunday, the switch was flipped. He was switched over to BiPAP, received 4 platelet infusions, 3 red blood cell infusions and 2 albumin infusions in 24 hours.
Early Sunday morning as respiratory therapy was attempting to fit him for a smaller BiPAP mask Rowan was fighting me. He kept telling me, "I don't need this, I don't need this, let me prove it to you right now. I can breathe on my own." I explained to him that we were doing it for his own good, because it was taking too much for him to breathe on his own now and keep his sats up. He continued to argue with me as they switched the mask over. During that transition, Rowan started to desat...significantly. He stared at me, wide eyed at first, and started panicking. He said, through very labored breathing, ""I'm sorry Mommy, I'm sorry Mommy, you're right... I can't breathe. I can't breathe. I can't..." And with that he started to close his eyes. There were 6-7 of us in the room at the time. I stepped back to let respiratory therapy and the nurses take charge of the situation. Then, I heard one of the statements you never want to hear while in the ICU with your child. A nurse grabbed Rowan by the face, looked him in the eyes and said "Stay with me Rowan. Stay with me, okay?", as the RT worked fervently to refit his BiPAP and stabilize his breathing. He quickly recovered and I came back closer to the bed, to be by his side. Rowan looked over at me with tears in his eyes, and said "Ok, Ok, Ok, I'm sorry. Ok Mommy". The scare made him realize how much he needed help. He now knew that he needed to be on the BiPAP, and he was scared enough to do so willingly the rest of the day. The crazy part, was that he kept apologizing for it. He felt bad for fighting us. He was more concerned with having offended us, than he was himself. I guess I shouldn't be surprised.
Throughout the day, his respiratory requirements continued to increase. He needed more and more fi02 settings, and had lower and lower sats. It was such a trying day. By the late afternoon, the doctors were rounding by his room every 30 minutes to an hour, and warned me that he may be close to needing to intubated. At first I did not want them to do that. Neither did Rowan. It is a difficult decision to make when he was still able to talk to me and still knew what was going on, etc. But his vitals and his blood gas labs started to prove that he really needed the break. Sometime around 1:00 am he could no longer keep his sats above 80s, his respiratory rate was in the 60s, and he was very uncomfortable, working extremely hard to breathe. I looked at the doctor with tears in my eyes and said "Okay, yes, I see that he needs it."
Rowan's ICU room quickly started to fill and change shape. They had such a well oiled machine working though. I wanted to stay because it is torture being outside, wondering how things are going the whole time they are working on him. They allowed me to be in the room, and I chose a corner to stand in. I wanted to be near, but did not want a front row seat. I will not describe every detail, because it is an undesirable and unimaginable experience, and honestly, I may not be words to adequately paint the picture.
What I will say, is that Rowan is intubated and remains on the vent right now. We were up until 5 am in the morning to make sure he settled in to the vent settings and stabilized. And as always, I was truly impressed with this child's ability to remain calm, grateful and agreeable during such a difficult scenario. He signed "thank you" to the doctors and nurses as he drifted off to sleep, under the sedation.
But now, I wanted to share his last words before intubation. Rowan of course warned the doctor, "Remember, I need more propofol than the normal person." I didn't want to be his last words before intubation, so I prompted him, saying "Every Day...?" and he answered me, "I will get stronger." I said, "I love you Rowan." and he mouthed, "I love you too." I thought that would be it...but then Rowan sweetly called out to the room, "Okay, I hope nobody is wearing blue gloves in here." We all chuckled. Then they got to work. Rowan did desat, and he did have to be manually bagged a few times while getting him attached to the correct mask. The person placing the tube stood at the head of Rowan's bed and warned her attending, "This isn't gong to be easy. He's so swollen. I don't have a good view." The attending concurred. The next moments, felt like hours, while they sedated, prepped, attempted, paused to bag, and then performed the intubation. No mother should ever have to witness such a traumatic event. And hearing the attending tell the fellow, "You have 60 seconds"...so intense.
In the end, Rowan was successfully intubated, and was placed on the ventilator with some pretty high settings. The goal and the hope is that his lungs and breathing will heal and recover with this respiratory break. He has remained stable during the day today. He arouses, and he is in pain, but his work of breathing is much improved on the vent. I thank God for the amazing team of nurses and doctors that he has aligned for us. I learn more and more each day, not just about medicine, but about true compassion and dedication. These people have saved my son...again. We are forever in your debt.