November 15, 2023

Two weeks! David has been amazing us for the last two weeks – it has certainly flown by. Also, once we think we found a rhythm, things get disrupted and a new routine is figured out. He had a big day today, but also a lot of rest. The day started out with him going in for his comprehensive MRI. We have not seen neurology yet, but they should be by sometime tomorrow. They did intubate him for the MRI, and then brought him back to his room with the breathing tube still in. He quickly showed that he was capable of breathing on his own and the tube was promptly removed and he was sent back to high flow air. Otherwise, most of the day for him has been spent resting and wearing off the anesthesia. 

Other news, they removed the arterial line that was in his foot. It’s nice to have one less thing sticking into him and we’re down to just the PICC line now. Before they removed the arterial line though, they needed to give his PICC line a medication because it was allowing things to be put into it, but it would not allow a blood draw from it. The medication took care of whatever was at the end that was inhibiting the withdrawals. 

David also lost more weight since yesterday once again (he’s down to 2.73kg). It’s a little bit of a concern. He was off of food though from midnight until after his MRI. They did up his calorie intake now to 28 kcals. Hopefully he will start gaining weight soon. Speech therapy did stop by a couple times today after the MRI but he was too sleepy to do anything with them. They will try again tomorrow as they would like to start working with him on oral feeds. 

Now our most exciting news – David is graduated from the ICU and headed upstairs to a general unit this evening. We went on a tour of the unit this afternoon, and it seems pretty nice – the rooms are bigger and it has amenities that our last ICU room did not have such as couch, microwave, tv, and a shower. This will make visits from the siblings and staying overnight with him much easier. The biggest draw back is that the nurse to patient ratio up there is 1 to 3. I’m not sure that we are quite ready for that. When David first arrived in the CVICU, he had a breathing tube so his ratio was 1:1. After that tube was removed and he stabilized, it became 1:2, but the nurses still had a station right outside their rooms with a window into it so they were monitored at all times. Now the nurses will be at a nurses station. It will be quite an adjustment for us, but we’ll try to rest easy knowing he’s in good hands. We knew this day was approaching, but I just didn’t realize that today was the day. It’s just one step closer to going home! 

6 thoughts on “November 15, 2023

  1. Good news! Thank you for sharing David’s journey with us all, the downs and the ups and the uncertain times too, as we follow along through your journal entries and photos. So much love comes through them. David is making quite an impact on our kids, and not only because he is adorable! They would hug him if they could, and Eli and Anna too. We’ll keep praying for you all and all his hospital caregivers too (human and canine).

  2. Hallelujah!!! Our little warrior is fighting the good fight! Glad to hear how great he is doing. Question . Some of us have wondered what his weight and length was at birth. And he’s at the U?

    1. He was 6 lbs 2 oz at birth. No clue on the length, since they quickly hurried him over to his operating room, I don’t think they did a length. The next evening one of the nurses asked if we knew a length, and since we didn’t, they measured and said he’s about 19” long. And yes, we’re at the university children’s hospital.

Leave a Reply