Friday, March 1
How is it March?!
Cody had another great night!! There was so little report! At one point his j tube wasn't flushing. One of Coco's medications is a tablet that gets dissolved in water, but some tablet particles slow the flow. His nurse used a special flush and it cleared easily. That was the only thing she had to report!! He was sleeping well.
When I called this morning Cody was napping. He had been awake and playful early in the morning. He loves his Whaley hanging toy and is now trying to do pull-ups! lol Coco can't pull his head up, yet, but he's pulling his torso up and off the bed a bit so his back becomes arched. His Nurses told me he works on his abs.
It was a cold and windy walk up today. Sometimes the wind caught just right and it took my breath away. It was nice once I got off Boylston St, aka Wind Tunnel Ave. Cody was still asleep when I got in, but not for long! One of his nutritionists stopped by to do her weekly assessment. Cody's weight fluctuates because of his diuretics. To get a true measurement of growth and gains he is examined and measured once a week. Today she told him she was Very Happy with his fat stores and she couldn't immediately feel his bones. Of course, he LOVED all of the attention. She was going to measure his right arm, but he has a PICC line in that arm. It's almost like he understood what was going on and he reached out with his left arm. I'm sure it was coincidental, but it was So Cute and Coco seemed So Proud of himself!!! I had the opportunity to talk to his nutritionist about what happens when my frozen milk is done. I'm not producing as much as he eats in a day and our massive freezer supply is dwindling. We have a few weeks left. I was happy to learn there are other options aside from formula. Also, it should be an easy transition for him and it's 100% balanced for all of his needs.
Cody's antibiotics ended today! Nothing grew in his cultures. That means No Infection! I still think his temperature spike was from his P.H. and cardiac conditions. Cody's feeds also increased today! Every day he's getting back to his baseline!!
We got to video chat with Daddy before he came down. Cody gets SO excited to talk to Ben!! Cody reaches for Benny's face on the phone as of he was with us. Today he pushed my phone aside and looked behind it. Then he was even more excited when he saw Daddy was still on the phone. I love watching his little brain make connections.
During his 2 pm cares Coco was due for his nebulizer. The R.T. this week is one we know, but not one of Cody's regular Respiratory Therapists. Oh my, our Little Peanut was funny today!! He was stalking his R.T. Every move he made he would study him. Cody had a shy smile the entire time, but not his full big smile. Cody's feeding pump was alarming bc his feeds had finished. His Nurse was waiting for more feeds to come from the Feeding Prep Cntr and asked the R.T. to silence the pump. The pump is at the head if Cody's bed, on his medication tree. Coco was straining his neck to follow him. When he walked to the other side of Cody and said Hi, then Cody gave him his big smile!!! I just wish I could have a Cody cam all the time!! Oh my goodness this makes us so happy.
Cody took a late afternoon nap and I ate lunch. When I got back I was going to hold him, but he was still asleep. He woke up happy and playful, as usual! It was still a little bit of time before I could hold Coco. He had a massive diaper that required him to have a full linen change and a mini bath from shoulders to knees! Not even his Baby Bear Lovey was spared. I took care of Lovey while Cody's Nurse and Friends helped with his cleanup and new bed. It's time for his babies to be washed anyway and switched. I know he loves his babies so much and I hate to move them around on him. I think I have more of an emotional connection to them than he does.
After Cody got new everything, including a new clean actual bed, it was Momma's turn to Cuddle with Coco!!!! I was so happy I cried. I have missed holding him so much!!! It felt so good to have him in my arms again!! Coco and I played some mini-movement games while he was awake. Little things I can do to sneak in some P.T. and O.T. Anything from playing Itsy Bitsy Spider with his hands to letting him push on my hand with his foot. We even had some sensory play with sights and sounds. Cody's coordination is developing! He Loves to chew on his fingers and is getting better at figuring out how to get them under his breathing tube support bar!! He is also doing more individual finger movements, rather than using his whole hand, or the back of his hand. His strength is there. That we know. It's good to know his Team encourages it. I think he's doing pretty well for having been bedridden his entire life.
I got to hold Cody for over FOUR hours!!!! During those four hours, and all day, Cody had so many visitors!!! Everyone is so proud of him for recovering so well from his tracheitis and pneumonia. Even recovering from his little bump in the road last week had earned him high praise!! Apparently, Coco is a Lover AND Fighter!!!
The best part about holding Cody was that Ben was with us for almost all of our snuggles and bedtime routines. Tonight Cody has one of his favorite CICU Nurses and she's with us for the next four nights!
We heard a rumor that Cody may go to cath on Monday. This time they will not take him off the Nitric Oxide, but instead turn it on and off in the cath lab. This will hopefully give us the answers we need to move forward with getting his P.H. under control. I only heard it in passing, so I'll ask tomorrow. His floor was especially busy today and having had that child that usually needs all the attention, I did not want to distract anyone from caring for another child. If we get in past rounds tomorrow, I know I can always email Dr Kane and he'll respond quickly.
We can not begin to thank you enough for all of your love and prayers that you give to Cody!!! He is our Miracle Baby and every day he shows us how he earned that title.
Love Always
Ben, Taryn, and Cody
