May 14-17, 2018 "Severe dehydration"

Where do I begin? This past week has been a roller coaster, literally!! Rayden started have diarrhea Saturday afternoon. It continued into Sunday pretty severely. He was drinking Pedialyte but it would literally run right through him. Monday I called the doctor around 10am. By the time they called me back at 4pm he had already slept for five hours straight and I had changed around 35 diapers. His doctor suggested we take him on to the UNC ER. Rayden started throwing up about 30 minutes into our drive to UNC. He continued to sleep the entire way there. Upon arrival (7pm) they took us straight back to triage. Rayden's blood pressure was low and he was still lethargic (sleeping). The triage nurse escorted us to a room in the pediatric wing of the ER. The doc came directly in and wanted to start an IV. Both ER doctors seemed concerned about Rayden's low blood pressure, high heart rate, and lethargic appearance. Luckily they were able to draw blood and begin the IV in Rayden's foot where he has no feeling at all. He didn't seem to care, he was really out of it!! The blood work came back that his sugar was very low. When they checked it with a meter it read 60. (Normal blood sugar range for babies to 5 years old is 100 to 200.) That's when things got weird. The nurse brought back a very fat syringe filled with sugar water. She called it a bolus. She pumped that entire thing directly in Rayden's IV site. Then the nurses started taking turns drawing the IV solution OUT of the bag and PUSHING it directly INTO his IV site fast. I asked why they were doing this because the IV was dripping. The nurse stated that it wasn't fast enough. All this time Rayden was just laying there asleep, completely knocked out!! He had been asleep for over 8 hours! They said this happens when you become severely dehydrated. They continued pushing fluids for a few hours. When he still wouldn't wake up they called the floor doctors to come. One doctor used an ultrasound machine to look at Rayden's stomach. He was looking at the inferior vena cava. Somehow this told him that Rayden was severely dehydrated and would need lots of IV fluids so they admitted him to the hospital. We arrived in room 6W21 at 4am. What a very long night in the ER. Rayden continued to sleep throughout the entire ordeal. His IV blew at 5am and they had to call the PICU team to try to get another line. The PICU team arrived at 7 and was able to get another IV in Rayden's foot, this made 6 sticks for IV but at least he didn't feel them. Rayden didn't wake up until 8am Tuesday morning (21 hours straight). That didn't last very long though. After a few screaming belly pain episodes and a few more stooled diapers, he went back to sleep by 9am. He slept a few more hours and woke up at 11am. By 1pm he was screaming in pain again. Then back to sleep a few more hours. 

This roller coaster continued for three days! They would reduce the IV dripping only to increase it again. One minute he was up talking, the next he was back asleep. The doctors sent his stool off for testing but it came back negative for salmonella or e-coli. They started to think he was having a shunt malfunction but I believe his little body just wasn't strong enough to stay up for long periods of time yet. By Thursday morning they reduced his IV and he was tolerating liquids without Zofran. 

By lunch they unhooked the IV and we were discharged at 2pm. I thought this whole nightmare was over until Rayden threw up all over the van on the way home! Then he started having watery stool all over again! I refused to take him back to the ER and just continued to give him fluids at home. 

By Friday afternoon he actually asked for something to drink and was able to keep crackers in his stomach without being followed by an explosion of poop. I knew then he had finally killed this MONSTER VIRUS. 

"SEE YA LATER, UNC!!"

May 3, 2018 "Optic Nerve Solution...Finally!"

Have I said lately how much I LOVE our UNC doctors? Here is another example of what makes them so great. Dr. Grace has been just as worried about Rayden's optic nerves being swollen as I have been. She has messaged me numerous times through this long process, some even late at night just to calm me down. Today she even told me she got a second opinion ON HER OWN, from Dr. El-Dairi, Pediatric Neuro-opthalmologist at Duke. Now if this doesn't speak of her genuine concern and compassion for Rayden I don't know what does!!

Since Rayden's optic nerves have not changed since we first noticed it in January, all three specialists, Dr. Grace, Dr. Elton, and Dr. El-Dairi, agree that Rayden's optic nerves must have irreversible nerve damage from his massive hydrocephalus at birth. Since he is showing no other symptoms and his MRI's are unchanged, they believe this is just what his optic nerves are going to look like. If this were anyone else, without Rayden's background, it would be an emergency situation.

Even though Rayden's vision was better today (20/40 instead of 20/80 in the left eye), Dr. Grace believes there is already some degree of vision loss from the optic nerve damage. She believes he may have some peripheral vision loss that we won't be able to identify until he is older.

Strabismus eye muscle surgery is scheduled for June 22.

May 2, 2018 "Rayden climbing a slide"

You have to watch the video to the end to feel the JOY! After school today Rayden and I went to his little school playground. I’ve often wondered when/if he would be able to climb a slide like other kids. Today I saw that he could!! I am overjoyed for him. 

The steps are not too steep and the hand rails are perfect for his little hand to grasp. Most other slides are the complete opposite. I am so happy that he is able to experience the joy of sliding like other children. He wants to do it over and over again.