If you've had a really great day today I suggest you don't read this post right now. This is anything but optimistic, I don't think my writing can get any darker. I've been home for five days now, I'm emotionally drained and physically is not far behind. I try my best to be a source of hope and faith, find the positives of every situation but not tonight, no. I haven't got a smile to offer the world, my face is dull. I tried to watch a movie tonight to get a laugh out of me but I wound up turning it off. I couldn't sit through it because I don't wish for life to go on during this time. My world is essentially standing still and that's just the way I like it because it gives me more time with Jacob. I cannot sit here and enjoy my own company when I know others around me are suffering.
I suppose this is a good time to offer up the back story to what may just cost my brother his life. It all started in October when Jacob got a new night nurse to take care of him. I was at school so I didn't get to meet this nurse until Thanksgiving so I cannot conjure up a proper description of this person, I really didn't know them at all. Well when this whole ordeal with his stoma happened it was okay, doctors were able to get it to starrt to close up and we thought we were on the road to recovery. Come to find out, that mysteriously one morning after the night nurse's shift he was bleeding; his dressing around his site was almost fully coated in blood. Jacob had his site sutured up and again it was a waiting game. Soon after when things started to look better, the stitches came out again. But this time it was much worse. Not only was their blood again but gastric juices were leaking out. In your stomach you have digestive enzymes and they require a low pH to breakdown macromolecules. Also, proteins begin their initial digestion in the stomach so a low pH is essential for denaturing (unraveling) a protein. Figure a neutral pH is 7 so 2 is extremely acidic. With all considered, the acidity of the gastric juices started to eat Jacob's skin alive, it just burned right through it. Horrific right? Now you know why my baby brother who had every chance of living may not anymore. His stoma has been torn beyond repair and unless it's in God's plan for a miracle......I'm not sure.
I thought today was a better day, my mom changed the dressing around the site and it was completely dry which means no feeding or gastric secretions had leaked out. That would indicate that the site is trying to heal and close. However, something changed later in the day. I didn't ask questions because I see no point in it anymore, it's not hard to put two and two together with Jacob. His site opened again....the stitches that had been holding so nicely today just out of nowhere started to losen. In some respects, it's equivalent to getting a rejection letter from your top college and then reapplying and getting another rejection letter. No matter how hard you try, that top school won't accept you; no matter how hard me, my parents, and the medical team try, we cannot get Jacob's stoma to heal.
My parents are.....not the same anymore. They're quiet and don't say much. They're emotionally, physically, and spiritually exhausted. My mom said tonight 'Hope is everything. When a person loses hope they have lost all essence in life. I've lost hope and your dad is not far behind.' She's beginning to question God and if he cares about Jacob. She's just having a really tough time because this boy has already been through so much, everything that could've happened to him medically happened. Her heart is broken and she's really concerning me. She tells me she doesn't know how to survive a broken heart and I have no idea how to take that. Some days are better than others but there's not one day where the stoma isn't a disappointment. In addition Jacob feels absolutely everything. He's on pain medication around the clock and you know when he's due for it because he will just start crying and he NEVER cries.
These past five days have been really hard for me and everyone. I don't care that he's only four years old he is my best friend. The minute I walk by his crib or come to say hi he lights up. I think that smile of his is one of the most beautiful things on this Earth. I could sing the ABC's all day every day for him if it keeps him smiling. I would do anything for him (as would my parents) and the one thing we all want to do for him, we cannot. I know I say that all children deserve a life with a loving family and they absolutely do, there's no question about it. But I never said it was easy and this is far from easy. This feeling of helplessness can take everything from you, it shows you that you really don't have control and that life isn't fair. But that there's nothing you can do but live through it. I'll say this though, Charlotte was a blessing this year, it's the place that's given me my foundation for my faith. That's the only thing keeping my head above water. I trust God, I don't have to like what he's doing but I trust him.
.With that said, my birthday is next Sunday, all I want is for Jacob to be healed. That's all I'm asking, I was going to go get tested to be a donor for bone marrow (that's what I really wanted) but i'll skip that. Just please help my baby brother.
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