I know that last week I said that I did not want to jinx things...well, that was for good reason. Our little man had a minor setback over the weekend. He began showing signs of difficulty breathing and began requiring oxygen support (which he hasn’t needed in well over a month). This all began in the wee morning hours on Sunday. As you can imagine, the weekends are not the easiest time to get in touch with his doctors. It isn't impossible, but is not easy either. I knew in order to avoid another hospital stay, action needed to be taken quickly! I looked back at my calendar for the date of his last visit to Medical City Children’s Hospital and the nursing notes from that date. This gave me the information for the needed adjustments to his ventilator to add the balanced support his little lungs were needing. His nurse mentioned an odor coming from his trach and I saw yellow secretions when I disconnected from the vent to check. We immediately started him on inhalant antibiotics that we now keep on hand for these type of emergencies. Trach infections are extremely common!
I called the after hours answering service and left a message. Once I spoke to a live person and let them know what was going on, our pulmonologist was extremely quick to return my call. I filled him in on the details of what was going on with Drake and the steps that I had already taken. I could hear the smile on his face when he said, “I’m in agreement with everything you are doing. Good job, Dr. Gilstrap! Keep me posted.” I had to laugh when he said that. I was simply using my experiences to do what I thought was best prior to consulting with the experts. I’m glad to know that my instincts were correct!
The good news: Drake is showing signs of improvements and still is full of energy! He is very active and still busy with full therapies.
The bad news: He is requiring 1L of oxygen support (which we hope to wean down more tomorrow). We had to postpone his fitting for his prosthetics today because he is not up to traveling yet, and oxygen tanks empty very quickly while running at 1L.
While this is not ideal, he is getting better and we are thankful to be at home and not in a hospital.
Kennedy...Oh, Miss Kennedy! She’s a HOT mess and we adore her! She is saying everything imaginable and her sentences are becoming more complex. She surprises us daily and continuously makes us laugh. After being gone for several days, daddy definitely noticed a HUGE difference!