I probably shouldn't even blog today, because I'm totally aggravated about a lot of things... but I will. Here I go- Why does everyone expect me to go out of my way with Tripp when I'm the one with a sick child? Why? Because they will NEVER understand: 1.) the severity of Tripp's disease 2.) what I do on a daily basis to keep my son alive 3.) the emotional stress that goes along with caring for Tripp 4.) the PAIN Tripp has to endure every second of the day. I could go on and on. I think that's the hardest part about all of this (of course besides having to watch my son suffer)- is that no one will ever understand how bad it hurts to watch your child go through something like this.
I would LOVE to just be able to pack Tripp up and go to someone's house, or go to the mall, the zoo, or just push him outside in his wagon. But it's NOT that easy. It's not just about his skin- it's about his eyes he can't even open inside the house, much less when he goes outside. Not to mention the 1 million other things that are going on. Let me just TRY and explain all that my little man has going on, shall I?
Think about when you get a blister- just one blister on the back of your heel or something (I had one not too long ago and almost literally cried). Well he has those blisters (that are already sloughed off and open, raw skin) on every part of his body. Imagine having a blister from a new shoe- well, you can't even walk anymore with that shoe because it hurts so bad, right? His blisters are the worse on his butt and the backs of his thighs... so where do you think he gets the most pressure when we are holding him? Right there. Imagine just rocking back and forth on those sores (granted, he loves to rock... but it's got to be hurting) or the pressure of our arms when we hold him right up against those raw sores. And those are all over his body. OK, I'm not even close to being finished.
His fingernails and toenails. Don't know about you, but when I bite my nail to short, or stick something sharp up in my nail bed, or have a hang nail- it's like one of the worse things. So lets imagine that you don't have any nail bed at all to protect that raw skin- it's just open to the air- not healed... raw. So every time you hit it on something, it starts dripping blood. Or every time you try and press a button (like on a toy, for instance) the pressure of the sore hurts.
His face/head. Now these sores are open, and I can only put few ointments on the because it might get in his eyes from rubbing. So by being open, they become dry (don't heal, but dry out). So he is constantly itching at them. Imagine a tight collar around your neck with itchy sores and sticky dressings underneath it. Yes, I "lube" it up as much as possible, but it's never enough. He tugs and pulls those dressings out constantly- especially at night when he's trying to fall asleep. Underneath his trach collar are raw open sores, and when he pulls the dressings out from under the collar without me knowing at night... the sores get stuck to the collar. Yeah- ouch. He itches his head- even with cream on it- all day long. He's got a big huge sore underneath his nose. Know how when you're nose runs so much that it gets raw, and then it hurts to even wipe it. Well RAW it is, and with his nose constantly running... imagine how that feels. Not only hurts, but how obnoxious? Especially when it scabs up.
His trach. So in a few posts back, I showed you the picture of his airway that was almost completely closed. So that means the trach (a tiny tiny hole) is his only means of airway. So when that gets just a little bit stopped up, like when he's got a lot of secretions... he struggles for air. Know that feeling when you just can't catch your breath. Or my favorite analogy- when you get water up your nose, or in the wrong airway- and can't really breathe, or it burns- I'm thinking that must be what it feels like when I have to put saline down his trach to keep it moist or unclog it. And that's often.
His testicles (sorry, but I'm not leaving anything out). They are RAW. I mean raw. On both sides, and now starting in the middle. I put destitin, aquaphor, and cover them with a dressing each diaper change, and sometimes more often than that... but they stay so covered in urine, no matter what, that they just don't have a chance to get better. I'm not a boy- but I can imagine that might be one of the most sensitive areas that you boys have, hmm? I cannot imagine how much it must hurt him.
Feeding tube. Not only must it be uncomfortable to have a big tube in your stomach that is feeding you. But Tripp's tube is surrounded by raw tissue (about 2 inches below it and about 1 inch above it). And okay, yes, it hurts like every other one of his sores... but the tube that rubs constantly on his skin is friction, right? So the area right around the tube will never heal because it's constantly rubbing. That means that the stomach contents leak around the tube site. Yes, ONTO the raw skin around it. Think that burns? My guess is yes. I'm also guessing that stomach contents are usually acidic- which means it would burn worse than most things.
His mouth. Ohhh his mouth... I know I don't have to tell you how much an ulcer in your mouth hurts. I know everyone has had an ulcer. Well, Tripp has ulcers COVERING his mouth, tongue, lips, and gums. When he rubs his tongue or lips on his teeth, it makes an immediate ulcer. And his teeth are extra pointy from EB anyway, so that doesn't help. And it comforts him to chew on his blanket (better than "sucking" on a pacifier) but it still makes matters worse. He hates Orajel- he gags. And it only lasts seconds, anyway.
His eyes. His poor poor eyes. I can't even tell you what to imagine on this one. I've had little scratch in my eye before and it was pretty painful- and that is NO WHERE NEAR what this child is enduring. So just the sores on top of the eyelids would be painful and aggravating enough, right? Well he gets blisters in the INSIDE of his eyelids- top and bottom. Well when these blisters become raw tissue and rough and rub onto his cornea, causing the top layer of the cornea to slough off. So that's where the contacts come in... but they only cover the brown, not the white. So his still has pain when he blinks. Then, these blisters on his lids fuse onto his eyeballs... I don't know whether that is painful or uncomfortable, but I would guess both.
The inability to speak. How frustrating this must be. It totally breaks my heart when we are listening to music or watching a DVD and he starts moving his mouth or "clicking" like he wants to talk so bad. I feel so guilty for even being able to speak. And when he tries to tell us what he wants, he gets so frustrated. We are trying to enforce the sign language, but when he doesn't even feel well enough to play, he certainly doesn't want to learn.
Every morning that he wakes up... and his sores have stuck to the pillow or other places... he is in beyond excrutiating pain. So much that he will actually SHAKE. Can you imagine with all of those things going on, how sore and tense everything must be in the morning? His body stays stiff for a few hours after he wakes- even on pain medication. His eyes are swollen from laying on the all night and he can't even open them. Everything HURTS.
ALL OF THIS is why it's hard for me to understand why people think that I should go out of my way for THEM to be able to see Tripp. I think it's a TAD BIT easier for people to come to him. Wouldn't you think? You know how I know people don't REALLY get how serious Tripp's disease is- I have a big huge sign on the door saying, "Wash your hands please." Yet people still don't think THEY need to wash their hands. So what part of "The leading cause of death in JEB is infection" don't they understand? I work so hard in all of these aspects mentioned above to make Tripp as healthy and comfortable as possible while dealing with the killer emotional stress of watching my only son suffer. I don't get why anyone would want to add more stress to this situation instead of trying to make things easier for us. Goes back to NOT understanding. I pray every night for God to give me the strength to look past this foolishness... but it's the hardest thing to do when it picks away at you every day.
"Selfishness." Selfish people who can't see past themselves, certainly do not have the ability to think about other people. Whether it's where I'm living, where I go, or what I do... every decision I make, I am thinking about what's best for Tripp. And anyone who is not okay with that... I beg you to walk one day in my shoes... or even ONE HOUR. And no one could ever walk a day in poor Tripp's shoes... none of us would be strong enough to do it.
I'm angry... I don't want to be angry, but I am. I honestly have accepted the fact that God has a plan for Tripp... I know that this is all for a reason. It doesn't help the hurt, though. But the anger comes from the people that don't understand. And I know that people who have never met us and don't even know us shouldn't understand... but why is it- that THOSE people are the people who seem to understand more than the people who ARE around? It blows my mind. What really gets to me is that these people who judge, are living their lives... doing all the things they've always done. While Tripp and I are in the house all day long, fighting for just 10 minutes of comfort. We aren't enjoying this nice weather. We aren't living anywhere near the life I planned for us. It sounds like I'm complaining, yes... but honestly, It just ERKS me so bad that people have the nerve to add stress to an already very stressful situation. I can deal with taking care of Tripp, because he is an angel sent from God and a true gift to me. What I can't deal with is the additional drama while I'm trying to care for my son. I'm not the one who will have regrets or who will miss out on Tripp's life. I will be able to say that I did everything in my power for him.
So here's the News-flash- If the decisions I'm making for my son make you uncomfortable or don't convenience you... I'm not making them for you, I'm making them for Tripp.
OK... I'm done. Do I feel better? No. But I don't know if I'll ever feel better about this. But all I know is that from now on (even more than I did before).... my life will revolve around TRIPP.... and I will do everything I have to and can do to keep him as happy, safe and healthy as I can.
Have a nice week.
P.S. I still cannot get an OR room with anyone to get this out of his eye. So as of now... we are at a stand still. He's not even opening it. Still on the Codeine... will update you as soon as I know something. Thank you for the prayers.