Monday, March 4
Monday, March 4th
Cody had a great night! He was awake for party hour overnight and his Nurse Loved it!! She loves playing with him.
Cody was asleep when I got in, but he didn't look his best. His nurse agreed with me. We let Cody have his day with minimal disturbances. I thought he may be adjusting to no sedation and showing some withdrawal symptoms. If not that, then showing the beginning signs of being hypotensive from a Nitric wean. His symptoms and numbers were being closely monitored and there was already a plan for both.
Not long after I got in the PACT team stopped in. We're back to some of our original PACT friends and one of Cody's PVS doctors was rounding with them. I like it when she does that. She understands what's going on with Cody. We had a nice conversation and it wasn't stressful!
Cody was in and out of sleep all morning. He is still doing well moving the secretions out of his lungs and still doing well cleaning out his tummy. Today had had 3 linen changes before 3:00. Hia's Nurse agreed with me that it was time to size up his diapers.
I went to lunch at 3:15 as Coco was just falling asleep for his afternoon nap. I was only gone 45 minutes, but Cody had spiked a temp in that time. He was 101.1° f/ 38.4° c. It wasn't as high as last week, but they treated it as an infection risk and sent labs. It's comforting to know they ruled out infections before confirming it was wean-related. Cody does not do well with fevers. He becomes hypotensive when he's hot. He had a dose of Tylenol and a dose of Clonidine around 3:30. Those helped his sedation withdrawals. I believe it was from his Nitric wean. That was bumped up to the next level, from 10 to 20. Cody recovered after his fever cleared and I'm sure the boost in his Nitric helped as well. It's disappointing that he couldn't handle his Nitric wean, but I'm not giving up hope!
While Cody napped this afternoon I looked back in my calendar and Cody has not had a cath since November 29th! That was almost 14 weeks ago!! Previously we were lucky if we could get five weeks in between dilations! Coco did have a second open heart on December 18th, pneumonia, and a tracheitis flare all in between now and then. I wouldn't be surprised if his veins needed to be dilated again during his cath. The diagnostics and vein dilation can happen in the same appointment.
Cody had a good nap this evening and when he woke up we got to video chat with Daddy!!! Cody, he's SO excited to talk with Ben. He has an audience outside of his door ooo-ing and awe-ing at his smiles for Daddy!! We talked for a long time until it was time for Bed.
Cody had to make sure he had one more linen change before bed and was loving all of the extra attention from his Nurse and another very familiar nurse who came in to help. I Love watching him play when he's feeling well.
After some fresh blankies and a few cuddles and kisses from Momma, Codykins was tucked in for the night. I turned on some lullabies, his Astronaut, and kissed him goodnight. He doesn't want to miss a thing. I talked to his Nurse for a few minutes before I left and Coco would peek his eyes open, look from her to me, then back again, smile, and close his eyes. AH!!! I can not get enough of that boy! We Love him so much!!!
No catheter tomorrow, because of the fever. There's still potential for cath on Wednesday or Thursday.
I talked to Vivien Leigh this evening. Cody's story will air on Channel 6/ News Center Maine tomorrow. Possibly at 4:00 pm, 6:00 pm, and Definitely at 11:00 pm. She will send me the link to the story and I will share it here too.
Thank You Everyone for your Prayers and Love We are so Thankful for You!
Love Always
Ben, Taryn, and Cody
