03/24/10 Frustrations

The last couple days have been mostly uneventful. Eli is continuing to get bigger but there doesn't seem to be a good solution for his respiratory support as he grows. We had been under the impression that there was a plan for Eli's respiratory support that included waiting it out in the NICU until he got big enough to move up to the larger BiPAP mask that's available from Hospital Home Care.

We're being told that Eli is getting too big for the small CPAP mask he is currently using and he is too small for the larger BiPAP mask we were waiting to grow into. In the interim Eli's CO2 levels have been slowly escalating. There doesn't even seem to be a solid understanding of why Eli's CO2 levels are increasing. I feel like we need to be doing more to address this situation. How we didn't anticipate the issue with the mask sizes is a little troubling to me. We're supposed to be dealing with highly trained medical professionals whose job it is to figure out on-going care issues like this. The only thing anyone seems to recommend anymore is that we should consider doing a tracheostomy (tracheotomy) on Eli to help facilitate his respiratory support. While this is a scary thought I think we would consider it if we felt it offered Eli the greatest opportunity to get well. One of the pulmonologists met with Patricia yesterday and basically told her there were three options: 1) Take Eli home on regular oxygen, 2) Tracheostomy, or 3) We keep playing around with the CPAP/BiPAP machines and masks. Of course this only served to frustrate and anger me further. First, we've more than proven that Eli needs some level of increased respiratory support. Why they would even suggest taking Eli home on regular oxygen is beyond my comprehension but rest assured I plan on address this suggestion in the next day or two. Second, I think we're at the point where we need some convincing that a tracheostomy is going to support Eli's respiratory needs. With all the experimenting they've done with Eli's respiratory care I just can't see us committing to that course of action if we don't feel a tracheostomy is going to be 100% effective. Third, we've been messing around with Eli's respiratory care on both CPAP and BiPAP now for going on 4 weeks and I don't think anyone can legitimately tell us what level of support is going to work for Eli. The prospect of another month or more of sitting in the NICU waiting is more than I can handle.

Last but not least, we had another EEG (brain wave scan) done today. While we haven't received the final "official" results we have been told Eli's brain has continued to develop but it's still a little dysmature. I plan on implementing my own version of a holy inquisition in the morning to find out just what dysmature means because there was a lot of side stepping around this definition when we got the results of the first EEG.

The other day, a close friend, Randy, reminded me that his sister works as a registered nurse in the NICU over at Evergreen Hospital. He said she would be willing to sit down with us to talk about stuff if we needed a sounding board. I'm going to put in a call to her this week to see if she has some time to meet with us to talk about Eli. We definitely need to discuss a few things with someone who can give us an objective and informed opinion.