It has been a hard last couple of days. I felt very close to having a huge break down on one of the days and trying to find a way to "not do this" anymore. It has been a perfect storm that has been circulating above for awhile and everything came together to unleash. First the no nurse for two weeks, problems with the nursing agency, no other nurse available to even come help, the overwhelmingness of how difficult everything can be, all the medical supplies that came with no time to put them away, and top it off since Monday Sol has needed suctioning every 2 seconds, and that isnt being sarcastic, some times i would finish suctioning and have to start before the suction-er could be turned off! Suctioning constantly drives me mad. Literally drives me insane, the constant noise of the suction-er and having to go at it again and again, it breaks me. I start to wonder if he is getting worse, deteriorating, or what the cause of it could be. Will we have to suction like this forever?? It drives me crazy. Luckily Sol doesn't complain too much about it like Lua did. If she got into suctioning fits she would start crying which made it worse, he doesnt get too mad over it, just me. Then I find myself wanting to not do this anymore. Because I can't. Day after day with no real progress in sight, when you think he is getting stronger and better and you are hoping for great progress one day, and then days like this week where all you do is sit and suction, doing coughs wont work, can't eat anything, cant even go pee, sit and suction. Can't go on.
But then, some moment, I thought of Lua. I remember I said, after she passed, I didn't care if all I did 24/7 was suction, I would do it to have her back. It would be the same for Sol. I should be happy to be suctioning him because that means I still have him. He is actually being able to cough some of the secretions out of his trach, I don't think he has much choice because he has so many of them! But at least he is helping out. And we press on, because we have to, because I absolutely love him, and although I get frustrated and upset I would always do everything for him. I hope all parents have mini breakdowns now and then and it isn't just me.
Eventually we found different positions that stopped all the suctioning, we found certain things that entertained him long enough to be distracted so I could get the supplies put away, we got in a good nap, and he gave me funny faces when he woke up. Then May woke up with a runny nose and sneezing, so maybe this is his cold--- and hopefully wont get anything besides this---- -_- and then we keep moving forward, because we have to. Maybe what that nurse said to me about 'just fix him' hit me hard enough to feel bad that I'm not trying enough things to find an answer to help him out. I've spent a lot of time looking online to find any information on fixing skeletal muscle, maybe one day I will come across something. But until then we will just do the best we can. Some days are really grim and difficult, but I know how the days would be with out him and I would tolerate that a whole lot worse than days of constant suctioning. But don't get me wrong, suctioning all the time is a real huge pain!
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