Thursday, February 29
Happy Leap Day!!
Cody had a very good night!! He slept very well and some more medications were weaned! His oxygen was weaned by 5%, and his Epinephrine and Vasopressin were also weaned!! His Norepinephrine was turned off yesterday and has been able to stay off!! Aside from waking during part of his cares and doing his best to get kisses from his nurse, he slept through the night! 10 pm to 5 am!! That's a better sleep schedule than Momma!
It was still very windy this morning. I had a difficult time opening the front door to the apartment building! It was so cold that I went back in and called for a shuttle! I've been spoiled by all the warm weather lately!!
When I got in Cody was still napping, but he had been awake on and off earlier and was happy, even in his sleep. Cody smiles in his sleep. His blood pressure infusion medications had been weaned again and his feeds were restarted!! His feeds increased incrementally every few hours. Coco woke up happy and ready to play!!! It's so funny. He doesn't wake gently. It's instant smiles and reaching for hugs and kisses. We read some new books from his birthday, Thank You Dianne!! We Love reading!!
It wasn't long after we finished our stories that my Mom and Aunt Joyce arrived.. with Lunch!! There is a rule in the CICU that only two adults are allowed at the bedside/ in the room. I asked if it would be allowed if Mom and Joyce both come back and I was allowed an exception!! We try not to ask for extras because we understand the reasoning for the rules. The Charge Nurse knew that my family lives over three hours from us and only had a limited time during visits. Also, if Cody were sick or not doing well, I wouldn't have asked. Cody was asleep when they arrived and woke up soon after. He gave Grandma and Auntie Joyce big smiles!! He also offered his hand AND foot for kisses!!! If you're *really* Loved you get the foot! Silly Baby! Cody is not always a fan if having his feet touched, so it's a big deal to be offered the foot. It's like his own little inner circle. We enjoyed some time with Codykins while he was awake. We ate lunch while he slept.
After lunch, it was back to admire the sleeping baby. Dr Kane stopped by. I understand we're in a holding pattern with Cody. He didn't seem to do well off the Nitric Oxide and became hypotensive. Yesterday's cath was canceled. I asked if his slightly increasing fever was from his heart. I know enough about cardiac stuff that it's possible. My main question was if that could also cause his infection markers to increase. I'm fairly sure Dr Kane answered me, but I don't remember now. My mind was going a million miles a moment then. Dr Kane said he still wants Cody to go to cath and he was going to speak with Cody's CICU Team, as well as the other specialist. The cath will hopefully give some insight as to what the next steps are. Whether that's another new medication or is it still a possibility for a tracheostomy? I would love for Cody to come off the ventilator entirely, but it's been three consecutive months. I know we need a solution for supporting his PH first.
After Dr Kane left we had a visit from one of Cody's ACCU C.A's. She has known him since his first admission. I do love that Children's is just like Maine Med. Even though Cody is in a different unit, his original people still visit us. It's a lot like our NICU Family! Cody slept through his visit with Auntie Ali, but we know we'll see her again.
Once Cody was awake he could not get enough attention from Grandma and Auntie Joyce!! There were more smiles, more laughs, and So many more kisses!! We were sad to see them go home, but So Happy they came for a visit!!
Our visitors weren't done yet! Next, my cousin Caroline stopped by. She's one of Cody's NPs, but we haven't seen her for a little bit. As were talking one of Coco's ACCU NPs stopped by too. I think she was looking for Caroline, but we got to see her too. His ACCU team still checks on him/ us too. They follow his case as well. Mr Steal Your Heart is living up to his Birthday Shirt!
Eventually Cosy fell asleep again. He hadn't had a big nap all day. He's so playful! If he were home I think he would be trying to consolidate his naps or drop one. His cardiac life leaves him with very little reserve, so sometimes he needs a little cat nap. He took his big nap from 5:30 to 7:30. Shift change happened during his nap and he was almost confused to see his night nurse there. She's one of his Primaries and he loves her!! Once he focused in on her was so excited! He reached over for a big hug ( hand hold ) and air kisses!! I thought he was going to roll!!
Ben had to work storm duty today but was still able to video call after his shift. We started out by talking on speakerphone, but Cody was looking for Daddy. He pushed my phone over looking for Ben. A photo of Daddy wasn't going to cut it tonight. Ben video-called once he was in his truck and out of the cold... not driving! Cody was extremely happy to see and hear his Daddy!! Ben is so soothing for Cody. He always has been. The baby is so at ease with his Daddy and fell asleep at the end of a long video call.
I hung out with Cody for a while longer, wanting to keep him all to myself for a little bit. He slept for an hour, until 10, then woke up with a cough to clear his lungs! Great job to our big growing-up boy!!! After some more time playing with his Nurse, Respiratory Therapist, the Momma, he finally fell asleep around 10:30.
I had a hard time leaving him, but I knew I had to get the shuttle before 11:00 pm. I got in around 11, talked to another CICU Mom on Messenger and then talked to Benny.
Now it's time for me to go to sleep. ... I had a small chai tea at 5 AND a Dr Pepper at lunch!! I'm paying for it now. Caffeine is Not my friend!!
Thank You for Everything! We are so appreciative of your Prayers and Love for Cody.
Love Always
Ben, Taryn, and Cody
