October 5, 2006

Aiden had his swallow study done today and we had a family meeting with the new attending in the NICU. He didn't pass the swallow study, I hoped he would but figured he wouldn't. He was micro asperating into his lungs a little bit. So we now wait a week and re test him. Basiclly that is all we do, re test every week until he passes. In the family meeting today we went over the test and the option of Aiden getting a Gtube put in. I am NOT happy about that. I know it has some benifits but right now it's not an option for me. I want to give him more time and see if he can get the coordination down to breath suck and swallow. Another option given to us to to finally leave the Brigham and go to a rehab where they will help him learn to eat if that is the only thing keeping us at Brigham right now. With this option, they will get Aiden's hernia's repaired, then set him up to be transfered to the rehab once is is ok to do so. The thought of that is both good and bad. He's be a bit closer to home and a bit closer to "coming home" but on the down side, I'd have to give up my nursing staff in the NICU that I've grown very close to and have to deal with people that I don't know and who don't know Aiden. It's scary to me and a lot to think about. Right now we have to set up appointments to tour the two rehabs then we will have to decide what we think is best for Aiden. As for the G-tube, well that is not a decision I can make over the week end. That one is going to take us a bit longer and like I said I truley think he just needs more time to get things together. If however in 4 to 5 weeks he doesn't have it down, then we really have to take the G-tube option into consideration. It really sucks thinking it's a possibility, but at this point I don't deny the balck and white of things anymore.
He also got an Ecko done of his heart today. not for any reason other then to get a base line picture of what things look like now. It has to do with the pulminary consult that they also did today. We are still waiting to talk to that doctor, who said he will meet with us some time next week. Right now though, Aiden is doing good, and oh yeah, he was taken off his Reglan today. It's a trial week per sa, if things go well then he will stay off of it and if it looks like he could use it, then we will talk about putting him back on, or rather putting him on something else that does the same thing Reglan does, manybe even Pepsid. However I think he is going to be fine with out it. But what do I know, right....

It's going to be a crazy next few weeks. Aiden has an eye exam again next week, then another swallow study. We have to meet with the Pulminary doctor, and tours the rehab centers. I think my only real problem with all this, is making it fit in and trying to go to work too. It won't be too much of an issue for Chuck, but since I work in the day, it's going to pose a problem. Guess we will just have to deal. I'm doingmy best it's all I can do.. and in the mean time fighting a cold that I orignally thought was allergies, now I'm not too sure. I just hope I didn't pass it on to Aiden cause then I will really feel terrible...