Saturday, March 5, 2016

ready or not.

Our nurses and new staff at P8 are aggressively working at getting us home as soon as they can. The closer we get the more I realize I dont want to leave the comfort of the hospital and the doctors. Although they are doing a great job at giving us all the tools and experiences we will need when we go home. At this hospital they set you up to succeed when you go home. We didn't have as many training sessions in Milwaukee as we have had here, and today we were informed that our nurse is going to at some point take sols trach out so we can be in a controlled environment to see how we do with this happening. It's crazy! And sucks, but it is something we need to be prepared for. They are really going out of their way to teach us as many things as possible in hopes of us not needing to be admitted back to the hospital or worse. Although we know we will be back for any sickness, at least we know what we are looking for now.

Wednesday we get our home equipment and when we come back to the hospital with that stuff we can start to take sol out and about the unit and at some point we get to go on a drive with him and take him around Madison, woo hoo. The nurse is thinking he could get us out of here in possibly 14 to 21 days! We have been in the nicu for I think 68 days now.

Today we did our CPR training and that was really hard. I know we need to move forward but there were a few things we were taught that I didn't do with lua and of course wonder if I would have done it correctly maybe I could have gotten her back. But mostly what if I have to do it for Sol and it doesn't work again. It became a really hard and emotional day for me the rest of the day, and today was another one of those days I really struggled with our situation. There isn't anything I or anyone else can do about it. I have to hope tomorrow is a better day and try not to look at all the happy families that are having their perfect healthy babies, and try to not think about how society will never accept my son because we can only be ok with people that are normal. Even though we all know no one is normal, ill get to deal with all the idiots out there that will say some crap about how sad it is. Or how they are so happy they don't have to live like him, or have someone again tell me how they are so glad their kids are all healthy, or whatever dumb insensitive thought comes to their mind. It is frustrating, mostly because it isn't his fault, he did nothing wrong, lua did nothing wrong but for whatever unknown reason they get to suffer. This is a lot of weight to continuously carry, and some days I cant handle it as well. But that's the best part, i get no choice and I have to handle it. I shouldn't complain. I need to suck it up buttercup.


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