Frustrated, but out of ICU

So... the good news is that Gracie is on the mend and was moved out of ICU today.

Thankfully, that alone gave me enough fuel to calmly and rationally, but FIRMLY, deal with the rest of the day. I am beyond frustrated with what unfolded today regarding communication within the team of doctors, the team's communication with me and John, communication between nurses, communication and follow-through with the lab, and I think, worst of all, the physicians' attention to details.

On Friday we were told by two different docs that Gracie's chest xray looked great (which didn't make sense to us given her symptoms... I know my daughter), but if the film looked "great," then it looked great. Because it looked so great per the ER doc and the ICU attending, I asked a lot of questions once the attending came in to see us in the PICU. I explained her symptoms - - shortness of breath, coarse lung sounds, general fatigue, bloated appearance, more labored inspirations - - and I pointedly asked what, if not her lungs and/or heart, would cause all of these symptoms? He explained that the infection could have been brewing for some time and that those things could likely be caused by an infection. I then asked about breathing treatments... we had been giving her treatments around the clock but had not noticed a marked difference... and he said that it wouldn't have made a difference since it wasn't a lung issue.

This morning, I talked to the same doctor when he came in to discuss her improved status. I expressed that, while doing much better, she is still breathing fairly rapidly and her heart rate is still in the higher range of her pacemaker. He again suggested that the infection was the culprit, but that we could certainly do another chest xray to make sure that she hadn't developed a bit of pneumonia.

Following the xray, the on-call Cardiologist came in and said that her heart still looks enlarged and her lungs are wet, but better than on Friday. WHAT?! Needless to say, this started a whole line of questioning from me. I explained what we'd been told on multiple occasions by the other doctors and was not happy that this diagnosis had not been correctly interpreted by them. The cardiologist's suspicion was that the doctors had looked at her discharge xray from July 2nd and the xray from Friday, compared them, but then mixed up which was which when drawing their conclusions. I don't get how that can happen... there are also the written notes from the radiologist. How two doctors miss that is beyond me, unless one took the word of the other and never double checked. I talked to the cardiologist about all of my concerns... the same ones I expressed to the other doctor on Friday... and he felt my assessment of Gracie was right on.

Next, the Infectious Diseases Doctor came in and said that the line infection is definitely improving and, as far as bacterias go, Gracie's is the best case scenario. She described the bacteria as "unimpressive" and that it just needs to be treated, which we are. She also said that she is far more concerned about the pneumonia. THIS is what I thought was wrong when I brought her in... and this is what was "ruled out" on Friday by the ER and ICU doctors. WHY are we now getting an entirely different story about her lungs?! UGH. I explained all my frustrations to her, too, because anyone who walked through the door was going to hear about it. I may not be a doctor, but I play one in real life.

Thankfully, Gracie has been properly covered all along (for all the issues) with the antibiotics that the Infectious Diseases doctor prescribed. That's because she knew the whole picture... the line infection is real, but so is the lung/fluid issue. The consensus (between those who actually know what they are talking about) is that, like I suspected and feared from the start of the TPN regimen, Gracie was entirely fluid overloaded. Her fluid intake tripled and her body did not compensate well at all. She looks much better now, not quite so puffy as she did Thursday and Friday. She just started G-tube feedings again, slowly, today. And tomorrow night the TPN will resume, but at a reduced volume. We will weigh her in the morning to find out just how much she lost over the last few days. At least it was likely fluid weight and not "real weight."

So, back to today... The respiratory culture they took Friday got lost - - it never made it down to the lab. WHAT?! I could have walked it down... I know where the freakin' lab is! As a result of carelessness, we lost two days worth of growth time, thus two days toward determining what other bugs she might have. Seriously?

Then, (yes, there is more), when the night nurse came in, she said, "So, she was readmitted for a GI bleed and increased secretions?" I just about fell over. Because of my gaping mouth, she added, "That's what I was told during report at shift change." Um, no... she was admitted for a ridiculous fever, rapid respirations and general discomfort. She has a line infection and pneumonia. Ugh.

I should be fair, I guess, and say that I know human error occurs all the time, even in the finest of Children's Hospitals. I know things get lost, either in translation or tangibly. But, really... so much, all at once, regarding one patient? So very frustrated.