Wednesday, February 28
Cody had a good night. He slept well through the night. His feeds were shut off at 4:00 am in preparation for his cardiac catheter today. Since Coco was an add-on case, there wasn't a scheduled time. It would all be dependent on how busy it was in the cath lab. I asked about his temp because he was hovering at 100 all day. If he spiked to 101 he would get Tylenol, but his Doctors wanted to make sure Tylenol wasn't masking any type of infection. Cody's temp was exactly in the middle at 100.5°f.
When I called this morning Cody's Nurse, one of his regular girls, said that he had needed to go up on his Epinephrine quite a bit overnight because he was becoming hypotensive/ low blood pressure. His temp was still 99/ 100, but he was completely unphased by it. Cody was Very Happy and Very Smiley! There was still no time for the cath, but I remembered another appointment of Cody's was at add-on case and that was late afternoon. I believe it was his second open heart.
It was warm this morning, but still a bit rainy/drizzly so I took the shuttle. I talked to Benny nearly the entire way there. That was nice. When I got up to Cody I was told that he became hypotensive this morning and they had to restart all three blood pressure infusions. That was done because his Epinephrine kept needing to be titrated up throughout the end of last night's shift and through this morning. That took his cath off the table.
I know I should have been disappointed, and I was. No diagnostic catheter meant no answers as to what to do next. I hate this holding pattern. I wish there was a medication for Cody's p.h that worked as well as his PVS medication has! However, as disappointed as I was, I was also relieved. Cody has consistently had a slightly increasing fever. It could be many things, but since his pneumonia and tracheitis, I'm terrified of it being an infection. I wouldn't have felt comfortable with Cody going to cath with a temp hovering around 100.5°. I also know Benny wanted to be here today and would not have been unable to make it down.
I got in just in time for rounds. I was told about Coco's BP infusions and why. His feeds were being held, but he was getting IV nutrition. They also gave Cody some albumin. I'm pretty sure that's plasma. I know it's a blood product. The thought on that was that sometimes Cody and become too dry and that would add good volume. I understand it and I don't. His Attending also said that if Cody spiked to 101 then a full set of labs and cultures would be sent. This would check for anything and everything. His infection markers were slightly higher than yesterday, but nothing crazy. That was another reason for the potential labs. Cody's arterial line is temperamental and doesn't always read correctly. Because Cody is so playful and active he has a safety sleeve on his leg. It's to protect his art line from his kicking. That allows him to still play, but not kick his line out... he's done it before. During the exam, the Attending noticed that Coco's blood pressure increased when she took off the sleeve. Her concern was about the sleeve causing compression on his line. I would be surprised. His sleeve didn't seem fastened tightly enough for that. However, I'm not his Doctor and I don't know what signs she looks for. She recommended that they look for a new sight for his art line. Poor Baby! He's running out of room! He already has 2 other lines! Also during the exam, his Doctor said that Cody had good pulses and the goal would be to wean his Epinephrine. That was Very Good News! It's exciting when his meds go down. It's scary when they go up!
Cody had a happy and playful morning. During his early afternoon cares his temperature had spiked to 101.3°. They ordered ALL the labs, and cultures, and started him on his 48 hours of antibiotics, and an IV dose of Tylenol. If nothing grows in his cultures he can come off his antibiotics. If something does show he'll continue on them or they will change to a targeted medication. Cody didn't seem to mind the extra attention. He's so social!
After all of the labs were drawn, Cody had an echo. This is to see his veins after being back on Nitric. We call that his Baby Massage. He Loves his echos and naps during them. I played Spa Radio for him and he slept through almost all of it. When he woke up he was trying to hold hands with his Sonographer and kept smiling at her. Of course, she told him how cute he was... that encouraged him to be more playful! I gave him his teether and he tried to share it with his friend. I tried to hold his hand and let go of mine to play with his friend. He even tried to help her guide the echo wand. When she finished and reviewed her images she wanted one more of Cody's Right Atrium. He was So Excited!!! He had the biggest smile and was kicking his feet, but he seemed to know to be still once that wand was on his chest. His Sonographer was very happy with Cody's behavior and said some babies need sedation. Cody was very wild during today's echo. He typically naps through the entire thing. I was surprised by how awake he was!
Eventually, Codykins napped and I ate lunch. When I got back I pumped again and Phlebotomy came to get a pure blood culture, not from his lines. Cody is a hard stick and if the i.v team can't get it on the first try they won't continue to poke him. Cody tried to play with the Phlebotomist too. She told us another Phelbotomist wanted to come up for Cody, but she was called to another room. She said they were arguing over who got to come see him. I told her Cody is welcome to have visitors whenever they have time. He seemed to like that idea too.
I sat with Cody and played with him for a while. He was given a new birthday toy by one of his nurses and he really loves it. We also read stories, listened to Daddy's recordings of stories, and even held Daddy's heartbeat in our hands. I think it seems to help calm Cody. I hope it reminds him of when he got to skin-to-skin snuggles when he was a baby. That was our favorite part of holding him.
Eventually, Cody fell asleep for his big nap, just very late! He didn't fall asleep until around 5:30! His temp had come down by then, to 98° We wanted to talk to Daddy tonight, but Cody was still sleeping at 8:00! When he woke up at 8:15 we got to have our video call with Daddy. Cody was So Happy!!! All I had to say was Should we call Daddy? Cody got so excited! It was like when you ask a puppy if they want to play. We had a very adorable and fun video call with Daddy. We talked for about an hour and I thought Cody was getting sleepy again, so we said goodnight. He's been getting back into his routine and bedtime is between 8 & 9. 9:00 is usually very late for him.
Coco had his cares with another regular Nurse, giving away his smiles, and trying to share his sugar cookie teether. He had a few big yawns, so we turned off his lights, turned on his Spa Music, and I got my things together to go home. When he's tired, he won't go to sleep if at his bedside. I took my time, washed bottles from pumping, and picked up a little bit. I completely expected to see a sleeping boy when I left. Nope! Instead, I saw the most adorable bright-eyed face smiling back at me. Ah! How could I leave him?! I gave him so many kisses, told him how loved he is, and thanked him for working so hard to get better. I moved his new hanging toy but gave him some cuddle babies instead. He seemed content with that.
Tomorrow, my Mom and my Aunt Joyce will be down to see Cody and me! It's not going to be very cold tomorrow, but it will be very windy. So, it will feel cold. Brr... It might be a shuttle morning.
Thank You All for your Continued Love and Prayers for Cody!
Love Always,
Ben, Taryn, and Cody
Someone was ALL Smiles today!
