Early in the morning of October 22nd we were awakened by a sound that was very frightening. As Brianna took each breath it sounded like someone breathing underwater, a loud drowning sound. Angie and I both awoke to this and there was no way to ignore it and try to go to sleep. It brought fear to us. We called the nurse in and she came in the room and looked at the monitor. Brianna’s oxygen levels were OK and she told us that she was fine. I thought Angie was going to come off the pull out chair that she was sleeping on but she held her wrath. We told her that we did not like the sound and she listened to her with a stethoscope and said that she was moving air and was OK.
As she left the room Angie and I sat and listened to Bri for a couple more hours with our eyes glued to the monitor. At morning shift change, the nurse came in and introduced us to the day nurse. They quickly left to check in with the other patients and the nurses helper popped in to get things started. When she heard Bri she was taken aback. She immediately went to find someone to come and listen to her. She returned with the resident doctor and he came in and checked Bri out. He explained that he was going to bring a team in to listen as well and they would make a decision on the next step. This is known as calling a “CART” and we now know as parents we can call one ourselves. CART stand for Children’s Acute Response Team. Had we known it earlier that morning we would have done it ourselves.
It was not long after he told us this that there were eighteen people in the room assessing and discussing the situation. Angie looked very scared when the Chaplain showed up with the team but we later found out that they are required to be at each one of these assessments as family support. We wish someone had informed us earlier. After a few minutes it was decided that we needed to have a CT scan done and then we were to be admitted to the ICU. The nurses on the floor could not devote the time needed to help her and the ICU has Respiratory Therapists dedicated to the floor who can provide quick response to any needs. We were actually glad that we were headed up there.
They got Bri up to the room and settled and began an aggressive campaign of trying to get her secretions removed. They also were working to get her feedings going through the Gtube and were experimenting with what calorie levels and amount of formula she was going to be able to tolerate. They started out with a higher calorie formula that would allow us to give her three feeds a day. We had a choice of placing her on a 24 hour pump but chose not to do that as we wanted to be able to take her places without her having to be hooked up. The higher calorie feed proved to be too rich for her system and she had constant diarrhea as the food pretty much ran directly through her. So, the decision was made to go to a lower calorie but increase the feeds.
The care we received in ICU was so awesome. The first day up we had a great nurse named Kourtney McMann and an equally great respiratory therapist named Ashley. Sorry Ashley but I have forgotten your name. These young ladies are what all nurses should aspire to be. Very professional in their job but not so professional that they could not come down and be friendly and compassionate. They were a blessing to us during our stay in the unit and we are thankful for them. I am not saying that the rest of the team was not good because we received exceptional care but these ladies stepped up and caught our hearts.
Bri with Nurse Kourtney
During this time we were introduced to the cough assist machine. This machine forces air into the respiratory system through a mask and then draws it back out. The inhale and exhale pressures can be adjusted and also the dwell time. Since Bri was having trouble swallowing and moving secretions this machine would assist in that. It worked very well and they were able to remove many secretions.
The next day, October 24th, Dr. Pradhan and the Nurse Practitioner Jane stopped by Bri’s room. We discussed the swallowing issues and during the conversation I watched as her face tightened while she prepared herself to ask a tough question. “Do think this is a permanent thing?”, she asked. The discomfort showed on their faces and it was evident that we were not going to get the answer we wanted which would be a firm and definite No. What we did get was, “We can’t answer that. We don’t know.” Ang began to cry and I watched as her spirit deflated before my eyes. I reminded her that we could not give up hope. We pretty much spent the rest of the afternoon and evening feeling sorry for ourselves, feeling sorry for Bri. I turned to the Bible and searched for strength to handle the news. Thank God He was right there for me. As usual.