Forward Movement Again

Crew enjoying chats with his nurse 😊

 I know I usually go at least a couple of days before updating here, but I think the situation we shared justifies an update. 😅

We had a great nurse, nurse practitioner, and Dr last night for Crew. When the Dr saw that Crew’s pulse was still at 180 at 8pm last night, he ordered a bolus of fluid. That did the trick to calm things down. When I got in at 6:30 this morning his pulse was back down to the 130-140 range. It’s climbed a bit today up to 170 or so, but then will drop back down. When he gets flustered and upset from cares (diaper, temp, etc) his pulse has now only been jumping to 180 or 190 instead of 230 😳 like yesterday.

He’s still on two heavy antibiotics, Tylenol, and simethicone (gas meds). There is no change to his blood or urine cultures as of this tonight. Like I said yesterday, they’ll run for 5 days to see if anything grows. 

When I came in today I knew that one of his great primary nurses would be on for him, so we were glad that would be the case. However, I was surprised to see his nurse from yesterday (who also did a great job helping) on other kiddos in the same pod so that she could help as needed and knowledge transfer, and we also have another one of his best primary nurses in the same room too! She was taken for another kid right after we got her put on as a primary because her skills were needed there. To me it sure seemed that they were trying to make sure we were stacked for today so that we didn’t have a third day of getting upset with them 😁. Regardless of the reasoning behind it all, we’re very happy to see the team of nurses in Crew’s pod today.

The daytime nurse practitioner came by for just a bit before the whole team rounded on him and suggested to our nurse that they think it might be pneumonia. Something else we learned yesterday was that his chest x-ray showed cloudy lungs a bit. I shared those pieces with the occupational therapist who came to check on him right after the NP and it seemed to click to her that Crew probably aspirated, milk got in his lungs, and then it turned to pneumonia. Just theories at this point, but Lindsay and I have both seen him choke when feeding from his bottle (They’ve been trying different nipples to get the right flow since he has weak neck muscles).

Crew was wide awake for me this morning for about 3 hours. His fever had broke (thank you Tylenol most likely) and he was feeling much better. Still a bit pale and mottled, but better. Seems like it may be a mix of pneumonia, the first time he was introduced to formula, and him ramping up to full feeds quickly. Not entirely sure.

The plan for now is to wait until midday tomorrow to see if anything grows on the cultures. Our nurse and the OT seemed fine if it comes down to pneumonia since it probably is from aspirating and there are ways to help him overcome it.

Oh! And his night nurse was very thorough with everything and seemed great. She caught that the IV that was placed in Crew’s hand for the antibiotics was leaking and so they got it replaced with one in his foot. We’re glad that she caught it quickly. She told us this morning that she only works nights and so we asked her to be a primary so that we have some stability at nights. 🙏