Medical update: things are getting serious

I was talking with Jacob's nurse today and wanted to post this. Just to let everyone know how serious this has become.

The nj tube that he has placed will last about 10-14 days before it plugs. So his next one is due right around Christmas. Apparently Jacob's pyloric sphincter is not formed correctly so what would be a quick 10-15 minute procedure now becomes a 45 minute painful procedure. The site on his stomach looks absolutely horrific. I was around when the nurse changed it today; it had been dry all day and Jacob had been on his stomach for 2 flopping minutes in his crib and it just poured out. I saw it flowing out of his site faster than the nurse and I could get gauze to cover it. The good news is, it's not tube feeding leaking so he is still gaining weight. The bad news is that it is stomach acid leaking. And it is burning his skin off.

The nurse told me today that when Jacob was with the surgeon yesterday, the surgeon threw her hands up in the air and said 'If this doesn't work, I don't know what else we can do. I just don't know, I'm running out of ideas.' The surgeon is apparently going to present this at her meeting for difficult cases to see if anyone has seen anything like this. So far, we have not come across a doctor who has. Jacob cannot be the only one in the world who is having this problem!

There is one option they might try and it's taking the nj tube out and putting a j tube in his jejunum. Then, no food will go anywhere but the intestine. That will allow them to sew up the hole where the g tube was and hope that it stays closed.

You know, when you have people telling you they just don't know anymore and they keep repeating that they don't know, it gets really tough. It's getting really difficult because there is an obvious affect on Jacob. He's tired. It's procedure after procedure, surgery after surgery, and his surgeon is running out of ideas for the first time.

Dear God, Can this family have a Christmas miracle?

It seems like a year ago today we were here. Though we couldn't have known that we were going to have another year with Jacob. It's been a tough one; many moments where we thought we were really going to lose this little guy, but he's still here. Unfortunately, he had a really rough day yesterday. From my understanding, the doctors said they weren't going to put another nj tube in. And yet yesterday he went into the hospital to have one placed. In addition, the hole on his stomach is so big that they went and removed his g tube. So, the only tube he has is the nj; that's how he gets his fluids, food, and medications. Nothing goes straight into his stomach anymore.

The placement of the nj tube is not a pleasant procedure and Jacob never complains about anything being done except this. They don't sedate him so he feels just about everything. Of course they lubricate the tube pushing it through the nose, down the esophagus, and into the stomach. But he can still feel it. In truth it doesn't matter how much lubricant is on that tube, I'm sure it still hurts because he acts like it does. 

With that considered, I feel like these blog posts are never anything of real information. It's all trial and error. There's nothing new being done; it's the old strategies that are being combined in different ways, that's all. It's not good when your doctor has to back track. Which is exactly what Jacob's are doing. He has new doctors in addition to the old; specialists from a variety of fields and they all have their ideas. Then when they don't work they back track to what our original surgeon did in the beginning. I guess we are a little further along because they actually removed the g tube this time. It's less tension on the hole so hopefully it will close. 

Evidently, I haven't figured out how to make any sense of this yet. I have many mixed emotions and I don't want there to be anymore confusion than there already is. This isn't my fight, I don't have nearly the amount of strength my brother does. But I am struggling, emotionally. I don't think there's anyway to keep that from sounding selfish. In theory though, emotions come through in writing. I don't know the reason for any of this; I don't know how much longer he has to endure this crap; I'm scared to think about what the truth of it being over really means, life on Earth or life in Heaven. I had all of these long term commitments out in Charlotte this month. That would've meant that I came home Christmas Eve and Christmas then flew back a day or two after. That's all I was able to get. But out of nowhere all of those plans fell through, no notice, no explanation, just nothing. This happened right around Thanksgiving and that was the weekend I found out Jacob wasn't doing so well. I am a firm believer in everything happens for a reason. I just don't like to think about *this* reason. 

But in reality, this isn't about me. I mean what I say, I want my brother to stop suffering in whatever way God has planned. I'd like to think he gets to stay on Earth but I don't know. Then again, we were here in almost the exact same situation last year and we were blessed with an additional year we weren't' sure we had with him. Right now I have the "I don't know" mentality and that's not what I want. I want to have hope in that he's going to stay here. Not hope that his suffering will end soon and that be it. Truth is, I don't which one is right. Is it selfish of me to think that way? Or should I believe God will make it so he can live a full, long life? I have absolutely no idea. Or, is it totally wrong for me to even bring up the what if's? I know today is all that counts and here I am writing about the maybes. But to be honest, the more set backs we have with his feeding site, the harder it becomes to believe it's going to get better. I don't know if you call that losing hope. I don't think so. I have hope God is going to take care of my brother, I just don't know how. With that said, when you are in this spot, your mind wanders and you can't help it. 

~I know people have it worse, much worse. I should rejoice that he's here. But that doesn't make anything less stressful. Hopefully next time I write, I have some hope and positivity to contribute. For now, I'm just looking for that Christmas star in the sky. 

Does stress mean weakness?

I know I said I was going to continue with my "Thanking God" post but tonight I want to write about something else. This whole blog is really centered around my brother and this particular issue is really bothering me.

School is done for me for about a month so I'm flying back home on Thursday….
This Thanksgiving Jacob was in the hospital; even if it was only a day, a day is still time. Last September is when this whole thing began and by Thanksgiving of 2012 things really started to take a turn for the worst. The day I flew home for Christmas break last year, he was rushed to the hospital. Those entire two weeks leading up to Christmas he was in and out of there.

Can you blame me for not being a little nervous about what's going to happen? I know your response would be to trust God and well, I do. I trust that he's going to get us through anything that comes our way. Since things aren't' always okay with Jacob's health, I don't think about it in terms like that because often times hopes are let down. Trusting he will be okay and nothing will be wrong….let's just say the odds aren't in our favor. Trusting that no matter what happens God will make everything and everyone okay in His way is more like it. I know that sounds like I'm doubting His power and I'm most certainly not. It's just when you wake up almost every morning and you continue to get bad news, you stop looking for a cure for that specific issue because it's much bigger than that. You have to start looking for the overall cure~ whether it be in body or mind. That's what we (my family) do. As much as we'd like to believe Jacob's site will heal, we really can't say we know. The reopening shouldn't have happened and yet again doctors/surgeons are baffled. If that can happen then anything can happen.

Maybe this is me being too dramatic. Perhaps I'm winding down to a point where everything and anything that has been on my mind is floating to the surface. I truly don't know. I see all of these children who have the exact same issues as Jacob and they are passing away….it scares me.

Though on another note, over Thanksgiving break I was able to see the change in my family's faith. It's grown significantly and you can feel it. God is just about the center of every conversation we have. We depend on him indefinitely. I don't believe that we didn't before but I think that it's more pronounced now.

I do feel better after writing this; feeling God's graces wrapped around me. If I can feel his love after seeing the monster I had become then I know he will be by my side through whatever happens or already has happened. An added thought, I recently thought about the person I had become over the last month(s) and it terrified me. I couldn't help but feel weary about who this person sleeping in my bed and walking around my apartment was because it couldn't have been me. But indeed, it was me. A sinister, sinful, lost soul. And after all of that God still helped me and put me back on track. He let me wake up the next day and try again. That's not something to take for granted. Not at all. So maybe that's how I need to treat the unknowns of Jacob. As far as I know, he's doing extraordinary. I could be totally wrong but I wouldn't know. It's something to be dealt with only when I do know. In other words, I shouldn't cloud empty, ready to expand thoughts with my unknown worries. God has got this.

Faith, a beautiful thing it is. A beautiful, delicate, never failing, thing it is…..

Thanking God

It's midnight and I have a Psychology final tomorrow morning. But I cannot hold it in anymore! I am joyous tonight for God has saved me! I have been quite worried about the state of my soul lately….
Overall I've just felt less drive in life, confusion about everything, pride overtaking, and my vulnerabilities overpowering my spirit. Maybe that doesn't sound so bad to some but sitting in church earlier, I realized I have been a bad girl.

Lately, I haven't felt God's graces to the degree I usually do. It's been unusually less present. Now before everyone gets in a tizzy, it is not that God's graces weren't there. I believe they always are it's just a matter of if we let them in or not. With my pride overtaking my being well, it blocked out God. How horrific! Really, sitting here and admitting this is pretty brutal. The one who gives me unconditional love, takes care of me every moment of every day, helps the ones I love, promises me a place in His kingdom. How could I ever let such an abomination occur? Don't spit out that "you're human" crap because that's not an excuse ever. This is not a lesson I needed to learn because I should've already learned it. I had every cue that I was going against God's wishes and I did it anyways because it was what I wanted. There's the problem….there are too many "I's" in that sentence. It's not about ME it's about HIM. I really realized it last week. When I had been without His graces for a good few weeks and then one morning, I was sitting in one of the buildings at my college and was reading "Darwin Arkwright" for my Children's Literature class and I felt an overwhelming feeling of His love and grace. I really wanted to cry it seemed it had been so long. But it wasn't so random because I had learned something that morning (or processed it I should say). Being a Psychology major can be a great challenge. Not as much as other life struggles but nonetheless it can make or break you. There are many psychological disorders that I believe are complete bullshit and that it's a matter of having Jesus in your life. Well, after reading about all of these disorders it was easy to get caught up in the factual information. I started to believe everything I read and I fell victim to false beliefs.

The problem with any science is that it removes God from the equation completely; you are looking for an explanation you can prove, not one you say you 'just know.'
So it was at that very moment that I realized my purpose in life. It's not to help children, it is not to get married, or travel the world. It has nothing to do with any of my ambitions. The only desire that really matters to me is that my only purpose be to live for God. Everything else will fall into place exactly as He wants it to.

Truthfully, I cannot think of a time where God's plans were worse than mine. Sure, maybe they were harder to achieve but they worked out in the very best way. It was in the moment of being without God's graces (from blocking them out) and then opening up to receive them again that I realized I have nothing if I don't have God. Those were some dark, spiritually restless, and petrifying times. I had no idea what was happening to me. I knew if I pressed on and prayed that I'd find my way back but what was key is what I had done to wind up where I was.

I'll continue the rest of this post when my finals finish…….

Prayer Request

What is life? It's not an emotion, you can't touch it but you can experience it.

Is there any one word that defines the capacity of experience?

You can't put a limit on experience. Nor can you put a limit on your life. I don't care if an experience lasts for only a few minutes, the initial feelings it brought to you, the thoughts that flooded your mind, and the influence it had on that moment and your life are endless.

Jacob's feeding site is breaking down again. My parents didn't tell me until I came home Wednesday and I'm grateful because if they told me while away at school I would've had a breakdown for sure. It's a weakness that I certainly have to work on….but anyways, it's leaking a significant amount. I knew something was wrong when I looked at the pictures my mom sent me of him at his "Feast Day" at school. He had the binder on which has been off since he had the nj tube placed. Once that was removed, he had the bolus feedings and it was still off. I was also on the phone with my mom and I overheard in the background my dad in anguish saying "it's wet, It's soaking wet!" But today confirmed my fears and put my doubts to rest.

Jacob is not only leaking again but he's losing weight. He recently went back to his specialist who changed his feedings completely to compensate for the loss of protein (they were having a lot of trouble keeping his protein levels up.) I think about 2 weeks ago, he went back in to see his surgeon and wound up having to have sutures placed again. They have never worked before so why would they work now? All of the progress made; the healing of his site; it's deteriorating. And since his site is getting bigger and not smaller, they have placed the nj tube back in. It's not a painless procedure might I add...

It's times like these where I think about the moments where I was lazy or complained too much. Not wanting to drive to get groceries or having a professor testing us on material we haven't learned; all small "problems" if you look at the big picture. But if I'm being totally honest, they are not problems at all. As long as I do my best and put my trust in God, he gets me through anything and everything so school really shouldn't be that stressful, because it always works out in the end. I guess a small part of me confesses these things in hopes that it would change the outcome/reality with my brother. But realistically, I know it won't.

So with all said, he's not doing so well. Things could be worse but things could definitely be better. It's been a sad day. And we don't know what to expect next. Any prayers would be greatly appreciated. I'm not sure what God's plan is here….this little boy's struggle seems endless.

The Wannabe Facebook Status

This past weekend I've been really down in the dumps. Sure, I've had my moments of pure happiness only given to me by the grace of God but somehow I still allowed myself to feel sad. Homesickness has definitely been the biggest struggle and today it slammed me. I didn't cry (almost) but I woke up sad with a heavy, lonesome feeling. Not even the Disney Parade soundtrack cheered me up (okay I lied, Disney helped a little.)

In addition, I've had some financial struggles affording groceries; turkey slices and cheese slices is what I've been living on for the past 2 weeks. I mean, it's food so no complaints here! But I ran out of them today and I felt the physical effects of not eating. I didn't know what I'd be able to afford~ I figured more turkey and cheese slices plus maybe a frozen meal. I just needed to eat and that was all I knew. 

So on the way to Target  K-LOVE Radio was playing and at first they were talking about a man who had a deadly form of brain cancer and how he learned family was the most important thing in this life (besides God.) He said something along the lines that 'If things go well, I got to spend more time with my daughter. If things go bad I got to spend more time with my daughter." I almost lost it at that point because I am far away from my family and I understand how important they truly are. But then they mentioned this bible verse: "I have learned the secret to being content in any and every situation, whether well fed or hungry, whether living in plenty or living in want. I can do everything through him who gives me strength." ~Philippians 4:12

Not only did God give me some much needed strength to push on through but he helped me realize that I need to be content because it is all going to be okay; God loves me and that's absolutely enough. In addition, He helped me out food wise~ there was a big sale on most gluten-free products at the store today.  

Transition to adulthood

I encourage a happy life and stress the importance of family, yet here I am far away from my family. I'm feeling down tonight..well really it's been the last few days. I had a job interview this past week which got me thinking I should apply to more jobs. I just felt like God was telling me I should keep trying. I know my dreams, desires, and ambitions.

God also has instilled great confidence in me that I am on the right path (for now). That being said, the main source for my sadness is I can't have a job here in Charlotte and still go home to my family for the holidays. The more opportunities God puts in from of me, the more I have to tell my family I won't be coming…..

It just broke me because I had a very serious conversation on the pone with my parents about this. My mom was sad and she doesn't get sad that often, she's always the one telling me to get over myself (with good reason) but not this time. Both my parents told me to "do what I have to do." Well, what does that mean? It's being said in a quiet, melancholy tone so do I skip the job and go home? Or, do I actually do what I have to do? I'm telling you, this adult life is a great challenge.

I know God is going to take care of it all and there should be nothing to worry about. But indeed one of my flaws, I am worried. I've never spent a holiday alone. I don't even like being in Disney alone! Spending Christmas and Thanksgiving without the ones who mean the world to me? They aren't going to be around forever….

It's almost confirmed that I won't be going home for the summer and if I'm actually working, I won't be home for Spring Break or Easter either. This sounds like a bunch of guilt and regret seeping through the seams of a tied up heart. Yes to guilt but not to regret. If I tell the ones close to me in Charlotte, I know many will interpret it as in I want out of Charlotte. And that is absolutely not the case. I just happen to be in the part of the country where family is above all else; they actually have family day on Sunday. You eat big meals together and see extended family….what is that? It's new to me. The significance of all of this is simply just that the more involved I get in life down in Charlotte, the less time I get to spend at home. Is that really how it's supposed to be? God teaches me the importance of loved ones and how to live in the moment yet, I am not to be with them for very long? I don't understand. In fact, this entire blog post is a nightly prayer for me.

My family and friends are alive and well so what have I to complain about? I keep telling myself everything is going to work out just beautifully, as it always does with God at the center of it. But I cannot hold it in anymore, I'm still nervous.