Happy Happy Happy 9 Months to my precious baby man. I can't believe you're still fighting hard after 9 whole months. YOU ARE MY HERO. I love you with every ounce in me. You are my world. You are what keeps me going. No one knows what pain really is my baby... may we never take one single second, one single minute, or one single day for granted. You are God's child and you are living this life of pain and sacrifice so that all of us can be thankful for what we have been given. You will change so many people lives in your one lifetime. YOU make me smile. I LOVE YOU.
This time, I think I'll start with the positives first, because I am soooooooo far gone it's not even funny. I'm exhausted, drained, ticked off, and pretty much just mad at the world. Anyway, positives... I forgot, sorry. Randy and I got to go out to eat last night!!!!! Finally!! Long, long, long overdue. It was so so so so so nice. I can't even tell you. My mom, dad and sister all watched Tripp while we went. I could not thank them enough for a couple hours of freedom to try and get some sanity back.
Ok, that's it with the positives. I don't know if Tripp has a cold, or just doesn't feel well lately.... But I am pretty much about to lose it if things don't get a little better soon. The past few nights have been SO absolutely horrible that I got to a point where I wouldn't have cared WHO was in my house helping me... I just wanted a solid 30 minutes of sleep. He is at the point right now where he cannot tolerate the big humidifier on either. I've tried every single setting and he just fusses and fusses when it's on. But if I take it off while he's sleeping, he dries up. SO SO SO frustrating. I guess he does good during the day because he can cough the stuff up, but when he sleeps, it all sits and dries up. But the humidifier I guess makes everything too lose and we are up allllllll night long. I don't know. I'm so over it though. And it would be different if I could sleep during the day, but I have to wake up and drink my coffee just to make it through the morning and then I'm running around trying to get anything done if he takes any kind of nap. I just can't sleep during the day. I tried yesterday, but my mind was just racing.
So I've tried to blog like the last 3 days and every time I start one, I get distracted and then I'm never able to get back to it. We went to the GI doctor on the 11th... whatever day that is (I'm too exhausted to try and think.) She scheduled an Upper GI for Friday. Just to see if his esophagus is narrowing with strictures or whatever. We may or may not just walk out depending on what they tell me he has to do. I am NOT forcing a nasty barium down his throat with all those sores. Just not doing it. Sorry. So if he happens to be a good boy and does well, then fine. If not, it's SO not worth it to me. Anyway, she also asked how long I planned on keeping him on the steroids.... my perspective is: if the steroids help his sores (mouth, body, whatever) I will keep him on them. If they make him happy and comfortable... as LONG as possible. Because I'm not even thinking about when he's 16 years old what the steroids could do to his body. I'm thinking NOW, today. tomorrow. And no further.
To top everything off, today was bath day and I decided that I wanted to do his trach first and get it out of the way because he wasn't breathing well to begin with and he's always too tired at the end of bath. SO he's NAKED on the table and decides that he can't breathe. I salined, and salined, and salined. I could hear it in there, but it just wasn't coming out. He was coughing and coughing, and breathing so so hard. I did the ambu bag to try and push it down, then I brought the big blue tube humidifier in the changing room to try and break things up. He was exhausted, upset, and that made everything so much worse. And with him being NAKED, we couldn't even pick him up and console him because the last time I picked him up naked to weigh him in just a towel, his skin peeled off. SO there weren't many options, but he finally calmed down. I think it was my punishment because earlier today I was so tired of seeing him miserable that I prayed to God to take his pain away. I told him I didn't care how he did it, just take all of his pain and misery away. And then he scared the you know what out of me. I told God I was sorry and I would never ask him that again.... God's Will be done.
So anyway, I'm moody... tired... aggravated... stressed... and my whole body hurts. And I won't ever ATTEMPT to tell you about Tripp's supply company and our issues with that. I'll save that for another day. My house is clean thanks to my mother for rocking little man after his bath so I could straighten up. It's amazing how what a clean house can do for me. Oh, and Happy Valentine's Day :)