amommysjoy: Pouty Post

Hey there. It's been a rough two days. Tripp is so miserable that I just want to cry for him but I'm too exhausted to cry. His secretions are constant... and I mean constant as in THEY NEVER GO AWAY. He is so frustrated by it and so am I. I am going to try and make an appointment with the dentist tomorrow if I can.. hopefully she will have an opening because I don't think I can go one more day feeling guilty for not doing something already. Did I tell you he is getting molars??? YES, two molars at the bottom and I haven't even checked the top because I'm scared to. How miserable must that be? The four teeth at the top and the four at the bottom are rubbing so much that it looks like he has an extra lip at the top and bottom. He's rubbing his face and ears so much that I'm now popping new blisters on his face and ears daily. His ears are RAW. He's getting Motrin and Tylenol rotated around the clock. I don't know what else to do. He hates the orajel and it's too big of an ordeal with him for it to only last 10 seconds. THEN, when we bathed him when we got home Friday, he had a blister the size of about 4 quarters put together on his leg. Don't know what it's from, but I know that it was HUGE (the biggest he's had), it was FULL of fluid, and it hurt him when I popped it. Tonight is bath night and I'm scared to see what it's going to look like. I hate this for him. I hate that every day is a struggle. I hate not knowing when something is hurting and not being able to help him. It's so hard to explain how I am feeling. Which brings me to this....

I just want to share with you the "you know what" that I have to deal with BESIDES the fact that I have to care for my sick baby. I got an e-mail from this random woman today that I don't even know. I won't write exactly what it said because some of you would probably go crazy like I want to right now. But it stated pretty much that
1. She was disappointed that I had "bashed" the ER staff
2. That I should not have verbalized what happened (I guess telling me how to write my blog)
3. That she couldn't believe that the staff would not have reacted to the situation (calling me a liar)
4. And that I needed to count my blessings
First of all, the only thing I wrote was on caringbride and it said that the ER nurse just stood there when Tripp wasn't breathing through his trach. I stated nothing other than the truth.
Now, I know what you are thinking... Why waste your time even writing about this?? WELL, because if you know me, you know that I do not get over things quickly. I feel like this made me SOOO furious that I needed to get it off of my chest. Who are you to call me a liar when you weren't there? And who are you to say that the nurses did what they were supposed to do when you weren't there? And if anyone counts their blessings... IT'S ME, because I thank GOD every night that my baby is still alive and still here for me to hold and love and kiss. I don't deserve to receive an e-mail like that from someone who doesn't have a clue about me, our life, or what happened. And I let her know that. Why do people like that even read other people's blogs? I guess they go around reading blogs and trying to decide how they can make people's lives miserable. SO, on that note... I just want to say thank you to the people who follow our family, read our blog, and pray for my son. And if you don't agree with everything I say or do, thank you for not verbalizing it to me because my life is hard enough... I don't need any added stress or sadness. I love all of you for that. You read what I have to say and you accept me for it whether you think it's wrong or right. Thank you.

Sorry to have a "pouty post," but it's definitely just one of those days. There is just no way to explain our lives to anyone. I can't even leave my house at all. Especially not after what happened, because I would never put anyone else in that situation. It's hard enough for me to know and remember what to do when something happens and I've been with him every day for 6 months. But to leave someone else here with him is another thing. EB is scary enough, but to add a trach to that is pretty intimidating. I would never forgive myself if I left and something happened. Maybe one day I will feel different, but not yet. I know I need to get out, I know I need time for myself... and one day I will think about myself, but not now. Little man needs me here. Sometimes, though, I just feel like I'm gonna lose it and then I'll be okay. It's weird. I guess God knows when I'm about to lose it and He carries me through it again. That's the only thing I can think of. Because it's such a strange feeling. I want to cry all the time... and trust me- I AM A CRIER. I used to cry at the drop of a hat (even if it wasn't my hat!) Now, I cry every now and then... like when my baby turns blue, but overall I feel like I've been so strong. I just don't know how. My Paw Paw passed away a few months before Tripp was born... I know he is watching over me. He was such a strong and brave man... I bet he's helping Tripp be strong, too. I wanted Tripp to meet him so bad and I miss him so much. If you're reading, Paw Paw... thanks for all the help! I'm trying to be as strong as I can.

I love Tripp so much. I love his big ole' eyes that can tell a story whether he is mad, sad, or happy as a clam! I love his hands... as painful as I know his little raw fingers are, he grabs a hold to our fingers and never wants to let go. I love his belly-button- it's just a little pink scar with a little indention, but it's so cute! I love his feet... OH how I love his little "happy feet." We call them "happy feet" because he wiggles them when he gets excited. I love his new smile- it is so cute when he wrinkles his nose and his eyes get real squinty. I love his cheeks- bo-bo's, blood, snot, and all... I kiss them a total of about a million times a day. I love his demeanor- sometimes he will let you kiss and love all over him and smile, but other times he will fuss when you even look at him- like "Lady, I need some alone time." I LOVE HIM. Every inch of him. And I would move mountains to make him smile.

GOD BLESS all of you that love my baby. Thank you, thank you, thank you.