Patricia is super sick now. Whatever nasty bug I had has been passed on to Patricia despite our best efforts to quarantine her from the illness. If your home and the kids are sick I guess you're going to get some of the germs no matter what you do.
Patricia getting sick is about the worst thing that could happen to us right about now. I'm trying to get back to a more normal work schedule and Patricia has been pulling the all day shifts with Eli. During the week Ian and Obie are staying with one of our wonderful neighbors or with Grandma, otherwise known as my Mom. While not ideal this situation has been working out well for us given the difficult circumstances we're dealing with. Now that Patricia is sick Eli is being left unattended during the day which makes me very nervous. Some of the nurses at Seattle Children's are absolute Angels and some are not. We've been blessed with a fairly regular nurse named Cassandra who watches over Eli most of the time. The nurses usually work 3 twelve hour shifts then they are off for a few days. Fortunately Cassandra is on Monday through Wednesday this week and we've felt good about leaving Eli there on his own. Thursday and Friday give me heartburn though. I'm going to try working from the hospital as much as I can this week so Eli has a parent and guardian present for as much time as possible.
Why do we need to have a parent or guardian present as much as possible you ask? Let me tell you. Today I arrived at the hospital shortly after 2:00pm. Eli had a fantastic night. They actually kept him on the nasal pillows all night and his CO2 level is a 56. At 3:00pm Eli is due for a bottle feed so I put up my laptop for a few minutes and get settled in to feed him. He usually takes the bottle over 10 to 15 minutes. Eli's about half way into the bottle when a doctor in surgical scrubs comes in to talk to me about anesthesia for Eli's surgery tomorrow. Say what? Surgery? What's going on here? Somehow the doctors scheduled Eli to get a G-Tube put in tomorrow! The doctor runs down the list of questions and starts to explain the risks of anesthesia to me. There's relatively low risk but anytime you put someone to sleep there's a chance that something could happen. Something bad. The shock of finding out they had scheduled Eli for surgery without consulting us was almost too much for me. I probably looked pretty grim because the doctor stopped in the middle of her spiel and asked if I was ok. I politely told her there wasn't going to be a surgery tomorrow. We just started discussing the G-Tube procedure and we had some other things to think about before we consent to a surgery. This whole situation is a total nightmare.
After the doctor left I called Patricia at home to make sure she didn't inadvertently schedule a surgery. Nope. I'm not sure how these things happen but I'm starting to believe all the stories about people going in for an amputation and ending up having the wrong arm taken off.
Needless to say I had a discussion with one of the NICU doctors and expressed my concerns about scheduling a surgery for Eli without our consent. It just makes me nervous to leave Eli unattended and this type of crap is the reason why.
Later in the evening I give Eli his 6:00pm bottle and then I wait for the respiration therapist to come in and put Eli back on the BiPAP. By 7:00pm I start asking around. Apparently they still haven't changed the orders in the computer and Eli is still scheduled to be put back on BiPAP after his 9:00pm feeding. I quickly correct them and get them in to put the BiPAP on Eli. This is just one more example of the oversight that's needed to keep Eli moving forward and toward home.
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