Ok, I have a minute so I am going to update! Yesterday Alex seemed fine all day. At 8:00 PM his temperature was 99. At 9:00 he went to bed. He called me crying at 9:45, saying he couldn't stop shaking. So I took his temperature and it was 103.5. After speaking to Dr. Koenig she advised/ordered me to go to the local ER. So we did! I must say, I was extremely happy with the care we received at Cook's Children. They took us straight back to a room, checked everything with me before doing it and stayed in constant communication with Dr. K. However, they were not very comfortable caring for Alex. Pretty early on the decision was made to transfer us to Houston. Unfortunately, the weather in Houston did not cooperate! We waited for transfer from midnight until 9:00 this morning.
At 9:00, two wonderful ladies from Cook's transport team met us in our room and our journey began. I can not thank these two women enough they were so thoughtful and caring. They did everything in their power to keep Alex comfortable and safe. So we left Cook's at 9:00 and travelled by ambulance to a small airport in South Ft. Worth. Their we boarded a tiny twin engine plane. The one hour flight was pretty uneventful and not nearly as scary as we expected. We landed at Houston hobby airport and werre met by another ambulance who took us to Memorial Hermann Hospital. We were in our room by 11:30!
Alex is holding his own. We cannot get the fever down. Shortly after tylenol it will come down to around 102. However, it quickly climbs back to the 104-105 range. He is complaining of a headache and dizziness, but has no other symptoms.
Yesterday's flu test was negative. We have repeated one here. We are also rerunning a bunch of labs. There is no doubt he has an infection. His coagulation (clotting) is being affected. Dr. Koenig said she was calling Hematology to come in and see him. The doctors think it is likely he has a central line infection or a worsening infectio around his tube. We will know more when the tests start to come back. In the meantime we are running extra fluids, will be doing his Vitamin K infusion to help his clotting, and IVIG to hekp him fight his infection.
Thank you for all the prayers. I will update when I know more.
We do not know much more at this point. We had a pretty rough afternoon. Alex's temp was up tp 106 which had Dr. k pretty concerned. We have to keep it lower then that. If we cannot keep it down they will move him to the PICU and use more interventions to keep his temp down. Fortunately, we have gotten it down for the time being. So we will watch and see if we can keep it down.
The other concern is that we do not have a source of infection. He is not presenting like flu and has had 2 negative flu tests. So far his central line cultures are negative. So if the fever continues and we don't know the source we will have to explore other possibilities tomorrow.
His clotting numbers are worsening so we will also watch those. As for now, we will try and get some much needed sleep. Thank you for keeping us in your prayers.