I have a lot to report that happened yesterday. I had another melt-down, maybe not so mini this time. I was feeling ignored and that the nurses weren't listening to my concerns. There is more to the story of the desat episode yesterday, namely that we were on our second nurse of the day, one that wasn't from our floor, and she didn't seem to know how to get the oxygen working for my baby. She also did a horrible job on the dressing change, and when the third nurse of the day showed up and took a look at Drew, the gauze was not taped down at all and his wound was open. I could feel myself getting so angry and I told Dan I had to step outside. I had myself a good cry and then found the NP and told her that I was upset and I needed to talk to her.
When we had our conversation it went something like this:
"We are on our third nurse today. The kid who freaks out when anyone touches him gets THREE different nurses? That is not ok."
"I have been asking about the results of the chest x-ray for three hours. I don't know if the nurses aren't telling you, or you aren't telling me, but I know the x-ray is back by now."
"I know this sounds terrible to say, but can we please get a nurse that knows how to do a dressing change? They keep asking me how to do it, and if they are going to ask me I'd rather do it myself. I understand that this is a teaching hospital and people need to learn how to do things, but if someone has never done a packed wet to dry dressing change before they need to ask someone who has done it to show them, not just guess."
So we ended up with x-ray results (the same as that morning), primary care nurses and the option to make a list of people we like. I am also going to start doing the dressing changes myself, because I probably know how to do it better than they do and I will definitely be more gentle and use less tape. The surgical PA showed me how to do it today and I'm on for tonight.
The x-ray from this morning showed fluid in Drew's lungs which accounts for the still low oxygen saturations and being on 1 liter of oxygen. They changed his lasix back to IV and they think that this will make a big difference in pulling that fluid out of his lungs and increasing his O2 sats. And we are on day 10 of IV antibiotics, but the surgeons want to keep him on them longer, no word on exactly how much longer.
We did spend some time in the play room today, playing with trains and the basketball hoop. It's harder to get around now because we have to take the oxygen tank and the portable monitor with us wherever we go.