05/05/10 Absolutely Amazing (Sarcasm)

This morning I got word that the night shift went very well. Eli slept a good portion of the night and Patricia only had to adjust his mask a handful of times. I'm hopeful that we've put the whining and complaining behind us now and we can now start to focus on what it will take to get Eli home. We also got word this morning that Eli was scheduled for the sleep study tomorrow (Thursday) night.

Patricia has been carrying the load at the hospital lately. I came down with another infection and had to go back into the doctors office to get another course of antibiotics. I've been coughing a lot so I don't think they would enjoy my company down at the hospital.

This afternoon Ian has a "program" with his preschool class and Patricia is leaving to pick him up around 11:00am. After his program he has class and after class Patricia will be heading back to the hospital.

At 3:30pm I get a call from Patricia. She informs me that one of the respiratory therapists named Jen, the same gal who made Eli a hat to secure his nasal pillows, on her own time and with her own money no less, called Patricia to let her know that the staff on the floor are messing around with Eli's respiratory support. They are trying to put him on a different mask and they've changed the BiPAP machine. She called Patricia to let her know so we could address the issue. Thank God for people like Jen who have compassion and intelligence. It's absolutely amazing (sarcasm intended) that they would feel it's appropriate to start tinkering with Eli's respiratory care after 2 nights on the floor when we've just spent the last 4 weeks in the NICU proving the mask and machine can maintain Eli's CO2 levels. I think it took me all of 3 seconds to flash to instant and unbridled white hot rage. I immediately packed up my computer and left work. Fortunately my office is about 15 minutes from the hospital so I arrived in time to address the situation. Patricia was on her way down to the hospital as well and she had the boys with her.

When I arrived they were trying to figure out a new mask. It's a good thing I had a few minutes to calm down during the drive because I didn't over react. I simply asked them what the hell they thought they were doing. The immediate response referenced the complaints over the last 2 nights and the fact that they all felt the nasal pillows didn't fit Eli properly. My retort included the fact that last night went very well. Why would we have any complaints from last night? I guess the same nurse had Eli for both nights and regardless of the fact that there were significantly fewer instances where they had to adjust the mask they felt it was appropriate to complain again this morning. I refuted the claim stating that Patricia was here all night and she said they only had to adjust the mask a handful of times. I also told them that we were not going to change masks. We had proven that this particular mask works to support Eli. We have been using it for 3+ weeks in the NICU and Eli's CO2 were stable in the 50 to 60 range on the mask regardless of the number of times they had to adjust it. Further, I said the mask fit just fine if they took the time to figure out how to use it.

Our goal at this point is to bring Eli home not spend another 3 or 4 weeks on the floor testing out every mask we can get our hands on to see if might happen to work better. I brought up the fact that we were once again messing around with Eli's respiratory care on the eve of a sleep study which caused us some issues during the last sleep study. With the last sleep study Eli was supposed to wear the nasal pillows for the study. Because they couldn't figure out how to use the pillows and because it was just too hard for them they opted to use a different mask for the sleep study. Of course this completely defeated the entire purpose of doing the sleep study but that's ok. Now we're messing around trying new masks and we have another sleep study coming up tomorrow night. I made it very clear that *if* we move forward with this sleep study we would be using the nasal pillows and we would find a way to make it work. There is no way we're going to do the sleep study if it's not going to give us some useful information. This will be Eli's 4th sleep study and 2 of the previous 3 sleep studies have yielded questionable data making us question why we're putting Eli through it and why we are asking our insurance company to pay for it.

By the time Patricia arrived I think they had received the message loud and clear. Somewhere in the conversation I had with them I asked if there was a handoff process between the NICU and the floor staff. They said yes of course there was. My response, "Well it doesn't sound like a lot of the pertinent information made it down here because it sure feels like we're reviewing a lot of decisions we made in the NICU."

Seattle Children's has changed me. I used to trust doctors and nurses and the care they recommend. Not anymore. I've seen the inner workings and this experience has taught me that medicine is more art than science. That might be hard to believe for some people because we have all these wonderful tests that give us lots of information. Tests are fine but the doctors who interpret the tests aren't using some formula that says 1 + 1 = 2. If a test comes back with this result it means X. Tests simply give them the information they need to make an educated guess. In the hospital setting you're hoping you get someone pretty damn smart with a lot of education and experience. We've been fortunate to have a couple of those doctors. The problem is they rotate out. When they leave you have another set of doctors who step in and they have their own interpretation of the data. Somehow the information and the facts you've worked hard to decipher with one doctor doesn't get passed on to the next doctor. That was the biggest shocker for me...communication is lacking! In the end you have a situation much like what we're experiencing with our move to the floor. Hey, let's try a different mask and a different BiPAP machine to see if we can get a different result. Thanks but no.

Fortunately the rest of the night goes without interference. Today just highlights for me why we need to get Eli out of the hospital now. If we don't get him out soon I'm convinced they will find a way to keep stringing us along. I think it's debatable whether they are doing this intentionally or with good intentions but in either case the net result is the same, Eli is sitting in the hospital for no valid reason while we repeat the same tests over and over again.