We are still at home... and still on the morphine (Tripp is, not me... yet. Just playing... kind of).
I am tired. Not physically... becuase I've actually been getting more sleep than normal. But I am so mentally tired and emotionally frustrated. I'm so tired of seeing Tripp in pain. I just don't know what is going on. I feel like we are fighting a losing battle. He's still on the morphine.... and he's still in extreme pain. What can be hurting him SO bad that morphine isn't even helping? And now I don't even think the pain is associated with a skin infection because he's been on 2 different antibiotics for about 4 days now... it seems like he would be feeling better by now if that was the case. I really think it's just his little scrotum that is so raw. That's the only area on him that's really gotten worse that could be hurting him that bad. I mean I'm not man, but it seems like that area is pretty sensitive.
My heart is breaking as lie here next to my little man in bed. He sleeps right next to me in bed, so there are many of nights where I just lay with my head next to his with tears in my eyes. I just wish I could take it all away. It's the most helpless feeling in the world when your child is suffering every minute of the day and you can't do a single thing to make it better. While I was laying with him tonight, he was fussy and restless. Then he finally settled and had dropped his red ball (which he has been holding 24/7- even when he sleeps). I found it and put it back in his hand and he grabbed it, opened his eyes to peek and make sure it was the red one- and pulled it to his chest as if to "hug" it, and then started clapping with it in his hand. Talk about break your heart... That a ball comforts him and makes him so happy.
Just to actually see him smile these days is a treat. Not only does he NOT get to do what other "normal, healthy" 17 month olds get to do... he is in so much pain, that he can't even do anything. It is physically hard to watch him in this much pain. And if it is his little scrotum causing this much pain... it's not like his wounds heal... at all- so this is something that I guess we will be dealing with for a while. So what do you do? Do you go up on the morphine? And let him be sedated all day to keep him from pain? There's no easy answer... to anything with EB. It just sucks. EB sucks.
But I don't want to end in a negative... Once again, I know that God has a plan. The plan has just not yet been shown to me. I know that one day I will know why my little boy was chosen to endure this pain. And I know his rewards will one day be SO great... it's just a little hard to see right now.
"'For I know the plans I have for you', declares the Lord, 'plans to prosper you and not to harm you, plans to give you hope and a future.'"
"Then Jesus told his disciples a parable to show them that they should always pray and not give up."
"Have I not commanded you? Be stond and courageous. Do not be terrified; do not be discouraged, for the Lord your God will be with you whereever you go."