Ron was on bedside duty last night, and when we changed shifts early this morning I saw a father whose heart and spirit were simply broken. Tyler had his most difficult night yet. His fever reached 104.7, so he required a cooling blanket, He tried to speak, but Ron couldn’t understand him. His shivering was so violent it shook the entire bed. His kidneys stopped responding to the Lasix. In his agitated state, he continually tried to tear off his oxygen and pull out his lines, so Ron constantly had to restrain him. Despite very high doses of sedative to calm him down, Tyler remained severely agitated until about 5AM, when he finally stopped shivering and rested. His heart rates were in the 170s and his repiratory rates in the 60s. He required more oxygen. Another complication last night occurred when they tried to tranport him to Radiology for his CT scan and tore open the surgical site where his central line had just been rewired. With such low platelets, it was very hard to stop the bleeding.
This morning, Tyler has actually been able to sleep some in between agitated states. As anyone familiar with the ICU knows, his rest will be interrupted multiple times throughout the day. The CT scan from last night showed sinusitis, colitis, and some spots on his lungs. These spots seem consistent with fungal pneumonia. His emerging white cells have already found these sites, and as they go to work, they are causing more inflammation and fluid in his lungs. The typical antifungal they would use to treat this is pharmaceutically incompatible with his other meds, so they will continue him on Ambisone and hope that his recovering counts will get rid of the infection. He is receiving 40 liters of high flow heated oxygen. Tyler is very uncomfortable with the nasal cannula and is suffering from very vivid hallucinations. When he tries to speak, it is not only difficult to understand what he’s saying, but to figure out if he’s even saying something that makes sense. All of this is very hard to watch. We’re praying Tyler won’t remember this later on. We will never forget.
I mentioned in the last post that our church did something for us. Last night our pastor called and said that a room at a Baltimore hotel had been booked in our name, and that we can stay until Tyler is ready to be discharged to transplant housing. The hotel is 5 minutes from the hospital and will save us 45 minutes of driving in each direction – that’s 90 more minutes with our son or 90 more minutes of sleep! No matter how all this turns out, I don’t think we’ll EVER be able to thank people adequately enough for this and all the other amazing ways we’ve been helped. While having a child whose life is in danger can be very isolating, we feel very much part of a large, praying, caring community.