04/23/10 What Goes Up Must Come Down

With Eli's CO2 levels holding stable on the new mask we're starting to talk about a plan to get to the floor and from there home. Our spirits have been flying pretty high lately despite the illness and Patricia's absence from the hospital. To her credit she has been calling the hospital 2 or 3 times a day to speak with the nurses whether I'm there or not! You can't hold back a mother's love or concern for her child!

I spent the morning at the hospital today then I went in to the office for a bunch of meetings. I got back to the hospital shortly after Eli's 6:00pm feeding. I was able to snuggle him for a little while and then it was time to get the mask back on and get the BiPAP fired up. By this time it was around 7:00pm and shift change for the nursing staff which delayed the BiPAP a little.

When the time came to get the BiPAP on Eli I knew we were going to have a problem. The Respiration Therapist (RT) was one of the guys who has been resistant to trying anything new and he hadn't been trained on the new mask. I had to show him how it went on and I worked with him to get Eli settled in. All I heard were complaints every time Eli turned his head and struggled to get out of the mask. The nurse wasn't much better. I don't know that we've ever had this particular nurse but she gave me the impression that she was more interested in chatting with her friends out by the nursing station than she was in watching over my son. In this case 1 caregiver + 1 caregiver = a big fat ZERO. I had been planning on leaving the hospital this evening shortly after we got Eli settled in for the night. I haven't had a lot of time to see Ian and Obie lately and I wanted to spend a little time with them tonight. I just didn't feel comfortable leaving Eli tonight and I was more than a little pissed off by the time I did leave. We're sitting in the NICU. That means "Intensive Care". Tonight I felt like we were straddled with two people who weren't all that interested in putting in the effort to support Eli because it's hard. We know the cards are stacked against us in this regard. The hospital wants to cover it's butt and the caregivers want to cover their collective butts. Struggling all night with an infant who doesn't want to wear his BiPAP mask isn't my idea of a good time either but that's what they get paid to do. I feel like we have a lot of pressure to simply get the tracheostomy because it's the "easier" solution in terms of "caregiver effort" and trust me, not all caregivers are created equally. Some of them are absolutely fantastic and some of them are downright lousy. Tonight we get lousy and frankly I'm fed up with the lack of effort shown tonight.

By 11:00pm I'm so exhausted I can hardly keep my eyes open and I haven't seen the nurse in our room for the last hour and a half. I need to get going, Eli is settled in and sleeping and the nasal pillows seem to be sitting comfortably on his face right now. I've been keeping diligent watch but I need to get home to get some sleep. On my way out I see our nurse chatting with a couple other nurses at the nursing station so I stop to inform her that I'm leaving. I tell her that I expect them to continue using the nasal pillows tonight and there's no excuse for not making it work. I say it loud enough and forceful enough that just about all the other people on the ward can hear me. If I have to be an ass then I'll be an ass. She assures me they will keep an eye on him. Yeah right just like the last 2 hours. I ask her to keep an eye on him to make sure he isn't desaturating too and she assures me that they have monitors out at the nursing station too. Whatever. I'm beat, I've said my peace, and I've been loud about it so they better make it work or there will be hell to pay tomorrow. Consider my spirit deflated.