June 29, 2015 "Fever!!!!"

Monday-(Day 6)-Rayden has been NPO (no food) since 4 am because they were going to try putting in the PICC line again and he needs to be sedated. The second PICC team came in around 10 am. They tried to look for a suitable vein in his arms with the ultrasound. They found one small vein that they thought would work, but were not confident. Therefore, after a lot of discussion, they decided it was not worth putting him through it without guaranteeing success. They were going to talk with the doctors about possibly putting in a different type of line that is inserted in the Operating Room.

So far the first culture is still clean and they are sending a second one today.

When the PICC team left I noticed Rayden didn't really perk back up. Around 11am I noticed he had a fever of 100.0. Although it has to be 101.0 for the hospital to consider it a fever, I knew something was wrong. When it reached 100.5 the nurse decided to inform the docs. They wanted to draw blood to check his white blood count. He was acting very sleepy too so I was getting worried. His brother, Justin, came to spend the day with him and he pretty much slept the entire time.

By 2:00 pm the nurse reported that his blood work was clean. Although the fever had gone down, I still knew something was wrong. He hadn't eaten a thing since 4 am. and he didn't even seem to want anything either. They started IV fluids again.

The fever returned at 5pm (99.3) In 30 minutes it jumped to 100.3! He was asleep with a heart rate of 177!!! (normally 102) He was shivering with his lip quivering. When he began MOANING I started to panic. Who can stand to hear a little baby moan in pain? This was just breaking my heart! I wanted them to do something, anything!! Make him feel better! The doctors ordered more blood work and urine culture (cath). Our nurse, Ladona, didn't want to stick this sweet baby again. Although she had gotten blood from his right arm earlier today she tried that arm again. It broke her heart when he started screaming as soon as she touched his arm! I understand Rayden is very difficult to stick. I know babies are going to scream when they are held down and stuck. But when she started pushing the needle all around under his skin over and over I got very upset. With tears in my eyes I asked her to stop. I couldn't allow her to TORTURE my sweet baby!!! She left to get the doctor. When they returned they asked if they could allow another nurse to try. I was hesitant. She informed me that Rayden's last two Vanc (antibiotics) levels were too high and it might be causing his kidneys to fail. They HAD to check his blood or they wouldn't give him any more medicine! I didn't want them to hurt him again but I didn't know what else to do. Jenica, our nurse from the NCCC, tried to draw blood from his left arm. SHE FAILED!!!!! The doctor asked if they could do a heel stick. Since Rayden cannot feel his feet, I agreed this was a good option. (They should've done this all along!) When she tried to stick the right foot she said she couldn't get enough blood flow. His foot was a little 'fluidy'. I COULD NOT BELIEVE THIS!!!!!! How many times were they going to stick him. He had already been stuck 6 times today! I didn't know what to do but I made them stop. He just couldn't take any more! The doctor said they were going to let the night nurse try. After he calmed down the nurse was able to cath Rayden to get a urine sample. (He can't feel this so I agreed) She said it was cloudy and she was pretty sure it was a UTI but this is not confirmed by the lab. Maybe this explains the fever.

They don't make it very easy for parents to stay in the PICU at night. There is a recliner in the room but no pull out bed or bathroom. Although we had a room at the Ronald McDonald House, I just couldn't leave him here with a fever. I stayed in the room with Rayden and Linda slept in the waiting room. They continued to give him Tylenol throughout the night. He was extremely restless. He jumped and squelled about every hour. His nurse had to prick his foot at 4am. Although he didn't sleep through it, at least he didn't feel it.

God, whatever is bringing this fever on Rayden, I ask that you remove it. He has been through so much already. He's fighting so hard. Please comfort him and allow him to rest.