Iris was having trouble breathing yesterday so my mom and I brought her to the emergency room just after 5pm. I called them on the way to let them know we were coming. I don't know if that helps things move faster but it couldn't have hurt. We've never had to wait the two times we've been in the emergency room but it probably is because she is a cardiac baby.
The short of it is that the steroids seem not to have worked and that it appears she still needs her Lasix to get rid of fluid in her lungs. In other words, she may not have had any inflammation in the first place and all she needed was to up the lasix dose since she's been gaining weight. The question then becomes - why does she still have fluid in her lungs? Unknown.
We got discharged from the emergency room around 11pm, maybe a bit earlier. I started out wanting very much to go home right away but at one point they talked me in to staying over night because she apparantly needed more oxygen [see below]. Evan drove down to meet us and helped re-convince me that there was no need to stay over night.
A big baby milestone was that Iris laughed for us while we were there. She has been laughing in her sleep but not while awake. Waking laughs are a new treat.
Now then, on to the oxygen story. I have become increasingly unimpressed with the medical folks we're dealing with. That's not to say that I am not sympathetic to the very real human aspect of practicing medicine. As a mother, though, it's infuriating when you think you are doing the best thing for your child only to find out that you have not been told the whole story. It's a problem of asymmetrical information combined with inconsistent care from the millions of nurses and doctors who see Iris. I could go on bu I'll get to the point.
When we arrived and were checked in, I confirmed that Iris was on 1/2 L of oxygen as directed by the pulmanology team at our Friday appointment. As far as I knew they left her on 1/2L when we were sent to the room. So imagine my surprise when the fellow came in to relay the message that they were concerned that she needed a full liter of oxygen to keep her sats [saturation levels] up. No one told me they had changed her oxygen flow at any time. The opposite happened at one point. When we took her to do a chest x-ray we put her back on our mobile oxygen tank at 1/2L. If she was on 1L beforehand they should have put her on 1L for the x-ray. They did not. All that time her sats were fine, meaning above 94%.
The short of it is that the steroids seem not to have worked and that it appears she still needs her Lasix to get rid of fluid in her lungs. In other words, she may not have had any inflammation in the first place and all she needed was to up the lasix dose since she's been gaining weight. The question then becomes - why does she still have fluid in her lungs? Unknown.
We got discharged from the emergency room around 11pm, maybe a bit earlier. I started out wanting very much to go home right away but at one point they talked me in to staying over night because she apparantly needed more oxygen [see below]. Evan drove down to meet us and helped re-convince me that there was no need to stay over night.
A big baby milestone was that Iris laughed for us while we were there. She has been laughing in her sleep but not while awake. Waking laughs are a new treat.
Now then, on to the oxygen story. I have become increasingly unimpressed with the medical folks we're dealing with. That's not to say that I am not sympathetic to the very real human aspect of practicing medicine. As a mother, though, it's infuriating when you think you are doing the best thing for your child only to find out that you have not been told the whole story. It's a problem of asymmetrical information combined with inconsistent care from the millions of nurses and doctors who see Iris. I could go on bu I'll get to the point.
When we arrived and were checked in, I confirmed that Iris was on 1/2 L of oxygen as directed by the pulmanology team at our Friday appointment. As far as I knew they left her on 1/2L when we were sent to the room. So imagine my surprise when the fellow came in to relay the message that they were concerned that she needed a full liter of oxygen to keep her sats [saturation levels] up. No one told me they had changed her oxygen flow at any time. The opposite happened at one point. When we took her to do a chest x-ray we put her back on our mobile oxygen tank at 1/2L. If she was on 1L beforehand they should have put her on 1L for the x-ray. They did not. All that time her sats were fine, meaning above 94%.
When I was told of their concern about her needing 1L we got into a long discussion about the chart and when they would have changed her oxygen level and particularly why they would have done it without telling me. Basically, I think it was mischarted and the nurses had a harder time setting her oxygen level on the wall than on our home machine. So they meant to set it to 1/2L but it was accidentally set higher.
Anyway, to avoid beating the dead horse, I later requested that they lower her oxygen when it was clear that 1L was keeping her in the high 90s and even 100, higher than necessary. At 1/2L she dropped to where they wanted her all along, above 94%. (This was after receiving her dose of Lasix, too, so that muddied the waters.)
We all came to an agreement that we could go home and come in for a follow up in a day. She had a previously scheduled appointment with Dr. Sagel today, so we're keeping that and then return to the cardiology clinic Friday a 8:30am.
Today Iris is 3 months old. I typed this all with one hand while she sleeps in my arms.
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