Wednesday, July 20, 2005

Wednesday July 20, 2005 Zack was fever free for almost 24 hours. Throughout the night his heart rate and respiratory were good. His white count was stable at 14. The CAT scan showed no change and even some improvement. Dr. Van Meter (ID) explained that no MRSA was found in his lungs, which means we are only battling it in his upper respiratory. During rounds I discussed with Dr Mutchnick what would make me feel better about Zack moving from ICU to the Critical Care unit here. I was concerned about his care being managed by interns and them cooperating with my busy visiting schedule. Dr Mutchnick agreed to let me check the floors out for myself. He also told me that he was scheduled to have the feeding tube (peg) put into his stomach at 2:00 PM. Christian is Zack’s nurse today and we discuss why Zack is not doing what he was last week by following commands. He says they are taught that the body’s resources are divided…1/3 to fight infection, 1/3 to repair damage and 1/3 to maintain basic functions. Right now Zack has to use more than 1/3 of his energy to fight this infection so he has less to spend on repairing his neurological functions. Whether that is accurate or not it seems logical that once we have cleared him of this infection he will have more energy to repair his brain. He did spike a fever of 101 at about 9:00 AM. At 10:00 AM Karen came to give him physical therapy. She said he was right there on the verge of waking up. I met with the Brain Injury Trust Fund to apply for grant money to help with medical bills not covered by insurance. Zack is still on the Linezolid antibiotic as well as arousal drugs and one to help with the stiffness in his joints. I decided to take a little walk to Kosair Hospital to check out the Pediatric Critical Care Unit. My niece Sherry went with me and they showed us the room where Zack would be should I transfer him there. I came back to several visitors in the waiting room and discussed my options. I had been praying that God would give me clear signs as to my next step for Zack but wasn’t getting an answer. I decided to change what I was praying for and instead I asked him to shut doors at Kosair if Zack was meant to stay here, but I had already made up my mind that I wanted to move him to the nice, warm, fuzzy place that Kosair represented to me.I saw Dr Mutchnick leaving surgery and told him of my decision to transfer Zack. He said he would get the ball rolling so I settled down happily. At 2:00 PM I went upstairs to spend some time with Zack before his procedure. Before long it was 5:00 PM and I was told it was unlikely that he would get his feeding tube tonight. It would be Friday before they could reschedule it. I was so disappointed because others had told me how much better Zack would be with a peg. Zack was stable through the evening but still not responding to any verbal commands. At about 10:00 PM I called Kim Myers (Nurse Practitioner for the Neuro Surgeons) to be sure they got my message about the transfer. She informed me that she had run into a roadblock because Dr Moriority had refused him as a patient at Kosair saying he felt Zack would be better served at University Hospital. We talked at length through my tears as she explained that soon Zack would have no medical issues keeping him in the hospital and if he wasn’t ready for Frazier we would have to consider a transitional home. Zack would have to be able to go 3 hours with no nursing issues before Frazier would accept him and we weren’t there yet. I desperately sought answers for other ways to get him to Kosair thinking that was the answer. Kim told me I was suffering from ICU withdrawl and it wasn’t uncommon, but that did little to comfort me. We have been in ICU for 13 days and the staff here is my medical family. I kept trying to pry the door open that God had slammed shut. It was my worse night since we got the initial phone call from the police that Zack had been in an accident and was Stat Flighted to University Hospital. Scott was extremely depressed because he was feeling guilty about having to go back to work and he couldn’t be at the hospital as much as he wanted. Rita (Scott’s Mom) was crashing. Nothing could console us. I kept thinking about how pitiful it was that God had answered my prayer by closing doors yet I still doubted him. I went up to see Zack one last time before leaving for the night. The staff could see the pain all over my face and tried to reassure me that he would be fine here at University. No one seems to realize the weight of every decision I make feels like life and death. I want so desperately to here God whisper to me yet I fill my ears with my own sobbing. Fear creeps in that Zack will be left in a hospital bed for the rest of his life. I ask for prayer that I will have peace again with whatever the outcome. I ask for healing even if it is only to get his smile back. I want Zack to be able to stand before other teenager and tell them how decisions made now could affect them for the rest of their lives. Please pray! I know God answers prayer and I need help knowing what to ask for. I need to live Psalm 27:14 Wait for the lord, be strong and let your heart take courage