November 9, 2023

Well, today was better than yesterday. It was a great sight to see that David’s night nurse had a smile on his face when I arrived, and that David was still extubated. His nurse said he did well throughout the night and was rocking it. It was a huge sigh of relief because it was really hard leaving him last night, and I completely drained. I saw his nurse from yesterday and she said she also went home and just crashed. It was a tough day for everyone. 

However, despite today being a better day, David had a really rough day. He’s been agitated all day with lots of crying. It’s a nice sound to hear after not hearing it since his first cry upon being born, but he struggled to be comfortable. Part of it is that he’s going through some withdrawal. He had been on fentanyl for the first week of life, and after getting his breathing tube out and having apnea, that was stopped. However, other medications he’s been given since to help him be comfortable have not seemed to work. His IVs have been failing today – he had his arm IV removed this morning and his head IV has been closely monitored and ultimately removed for a failure as well this afternoon. His pain medications were being administered through his head. Hopefully now that a new IV has been placed, his drugs start to provide hime some comfort. 

Other thoughts about his irritability were that his tummy was filling with air. They ended up trying to place another NG tube to his stomach to pull out the air. However, just like yesterday, they were unable to pass the tube through the left nostril and his right nostril is too small to accommodate both the NJ and NG tube, so ultimately, they ended up pushing the NG tube through his mouth to his stomach. 

David also received a blood transfusion this morning. When I arrived he was looking very pale. The blood transfusion would replace the blood that he lost with his PICC line placement and all the labs he’s had drawn recently. Today, he’s continued to have labs drawn throughout the day, hoping to see his lactate at a better number. However, his numbers haven’t really returned to normal, and his blood pressure is still a little elevated (they did get his heart rate to a better number overnight). Since he’s very irritable and his numbers are still elevated, his MRI will be postponed until a later date. At least his color looks better now. 

Otherwise, today he was visited by occupational therapy and respiratory therapy. He also had another echo done – which seemed to be the only time he was calm today. The lady doing his echo told me she met him when he was just born as she was in the operating room doing his echos. She told me a little bit about what happened in the operating room when he was born. The child family life specialist also gifted David with a new nuk bear that has the same chest scar as him. David seems to like that nuk because when it falls out, it doesn’t fall completely away from his mouth. He’s slowly learning how to suck, but even the nuk didn’t provide him much comfort today. 

Otherwise, it was Anna’s birthday today. So Adam took her and Eli to Sea Life and then they came to visit at the hospital afterwards. So, while Adam got to go and hang out with David for a bit, I took them to the kids area of the hospital. It was during the time that the service dogs were there, so they got to meet ours and David’s friend Fern! I was probably more excited than the kids were. They played with toys for a bit, before they did some painting – they each painted a puppy bank and a dog bone ornament. 

David finally calmed down a little bit in the afternoon after I returned to his room and his new IV was in. So, I snuck out a little earlier than I normally do hoping that he really would start napping and his quiet would last more than a minute, and also so I could go home and eat dinner and celebrate with the birthday girl. Here’s hoping that tomorrow David’s blood pressure is better under control, along with his labs returning to normal.