Someone Is Looking Out For Him

My family and I are pretty sure AJ sees his angels….

He will smile in your direction but he won't be looking directly at you sometimes. He may look above you, next to you, or in the complete opposite direction. But his eyes are totally fixed in that particular space and he will just sit/lay there smiling. Tonight, he was laying in bed and I was standing over him readjusting one of his tubes. He pointed up and then smiled angelically. Obviously I saw noting but he kept his gaze there for a few moments before looking back at us. It is such a fascinating moment but questioning at the same time…he cannot point up yet haha. Too soon. 

With that, Jacob's surgery went well. Those of you on Facebook know that he was able to come home the same day; as he was originally scheduled to spend some time in the hospital. And having him home has been absolutely wonderful! But we have run into a bit of a problem, which we knew was certainly a major risk. Jacob is sick. Since he cannot have any floor time we can only sit him up in his high chair, wheelchair, or in bed. We can hold him but we cannot let him move around. That being said, the risk for pneumonia in any scenario involving an extended period of time on bed rest, is almost absolute. 

In Jacob's case, a change in his heart rate is our usual indication of illness. That's not saying that a change in heart rate automatically suggests he's sick. But if breathing treatments and pain medications fail to bring it down then chances are he's fighting something off. His higher heart rate when sick is his heart compensating for the increase need for oxygen. You know, when people have trouble breathing their heart rate increases to pump blood (enriched with oxygen) more efficiently. To help him, he was put back on the BiPAP machine, which is nothing but positive pressure being pushed into his lungs. His HR on the BiPAP is 107-126 compared to off BiPAP where it's 145-155. 

Not exactly the direction we wanted to go in but we all knew it was inevitable. At some point, something had to give. Other than that, his dressing looks good. From what I understand, several layers were stitched closed and now he has steri strips on the surface of the closed hole (sounds so good to say that!) One of them already started to lift and that's not so great because that shouldn't be happening yet. Certainly not a horrible thing but not something we want happening at all this close to the surgery he just had. Nonetheless, all seems to be well with his site. Now we just need him to get better. 

Finding faith again and preparing for brother's surgery tomorrow

I wanted to blog tonight as it's the night before my brother's surgery. It's a bit like Christmas Eve because it's full of anticipation, excitement, and peace. The surgery may not work but it also might work. There are many possibilities but tonight, I can focus my heart on the successful possibility. I have no idea what tomorrow holds and I am very nervous. However, I know that God will take care of this.

This is my journey. My mom says that Jacob was put in our life to show us how to do our walk in life. So all who have been reading this, have been following me since my first blog. Although this has been a year long battle with my brother, I didn't start blogging about it until 3 months after. Nonetheless, a year ago from today, I was only at the stage of questioning the events. Evidently I still question, but the difference is that I have no expectancy for an answer. Questioning is a natural response for all of us, it is how one learns. But it is not always paired with an answer. At least, not right away.

Through this past year, I have learned many life lessons. We are not talking about just one or two no, we are talking about 10 or more. With that, I have received answers to questions; not necessarily the ones that I put on top priority but they were certainly necessary. One of them was about a guy I was in love with.  Some may argue that there is no "was" and that it is always "is." And you're absolutely right, I am and always will be in love with this guy. However, not in the same way. The reason I'm mentioning this is because this burning question distracted me from what I knew truly mattered.

I used to ask myself "Why did I still feel this way" and "Was anything going to happen?"

God's answer: My love for him was pure and true. His was not; you can obviously say "I love you" and not mean it. And he didn't mean it. That's the big hump I had to get over, I loved him, he didn't love me and that was okay. He was put in my life not only as a lesson but to help me through some very rough times last year. He introduced me to the bible and brought me to a church that still today, I hold very near and dear to my heart.

It's pathetic and sad but all that my brother taught me over the summer was lost when I focused on this guy. It was by no means the guy's fault, it was how "emotionally invested" I was. I got caught up in trying to develop a friendship that would never work. I wasted an entire semester on someone who was only passing through in my life.

I know this doesn't apply to anyone in particular but maybe the situation is somewhat relatable. I see so many Facebook statuses and tweets about finding "the one." Guys don't really do this but girls, we are all guilty. We post statuses about wanting that special someone to cuddle with, watch movies with, go out to the city with, and be there to help us through life's toughest trials. We are all asking for someone to be there in the good and bad times. Though in reality, we have already been given someone….GOD!!!!

~Will He leave you? No.
~Does He cheat on you? NEVER.
~ Does He answer when you call? Yes.
~Can you trust him? Yes.
~Does He LOVE you? Forever and always.

I know you can't cuddle with him but he can give you graces that are more valuable and entwined with His love…maybe he's not exactly watching movies with you, but he is actually with you. The point is, God is always there and He never leaves. If we would stop focusing on temporary matters, happiness could come more freely and from the right source~ Heaven sent.

As serious as everything has gotten with my brother and the inconsistency of each day, I've been taught one very important lesson. Nothing matters more than God and my family. God was the one who gave me my family so, that's how that works. Without God, I wouldn't be here and I wouldn't have the love from Him to realize what He has given me. I'm nineteen, almost twenty and it's taken me that long to realize how important family is.

 The reason I am writing about this, is because it took this journey to learn what matters most in my life, what I'm living for, and how I need to live each day. With that said, I cannot possibly write out everything that has changed in my life. That would be too long and besides, I feel that that is something between me and God. That's my personal life and it's best that you analyze your own.

When you take apart your life, you'll find that the less important details fade away and only the strong and consistent details stay. When something important to you is in danger of leaving, you begin to do some serious prioritizing of your life. That's what I did when I learned how life threatening Jacob's condition was. Suddenly, that guy that you have always liked fades away, the want for new clothes is no longer mentioned, friend time becomes less as you work to spend more time with family, and your faith, it begins to develop an iron (only because I think that's a strong material) guardian around it. Above all things, that becomes the center of life. And to be honest, when you realize how truly survivable life is without all of this extra stuff, it is a gift that can never be returned.

I am stressed to the point where I think my body could shut down from all that is happening around me. I look at other 19 year olds and realize how ridiculously different my life is. But I am more HAPPY than I've ever been in my life! Allowing God into my life is what gives me that irreplaceable joy and content feeling in my soul…any day and any time; good or bad; scared or content; relaxed or enraged. I don't always do the right thing and I don't always understand God's purpose (like with Jacob's battle) but the one thing I do understand is His love.

I am tearing up because I know I'm going to be okay; my family is going to be okay. That blog about "Thanking God" well here's the other half…I have been selfish and allowed my pride to overtake everything. What I wanted was this guy and that's not what God had planned. I wanted this job over the holiday season but God brought me home instead. I want my brother to live a long life and to walk on his own. God has never failed me in doing what's best. I think I know best but I do not. I'm a little human who gets myself into troubles that I cannot get out of alone.

In truth, I have been delaying this post because I was mainly trying to get to a better place with my faith. I knew I wasn't where I needed to be and tonight felt like the night that everything started to make sense again. For the first time in a long time, I felt like I did over the summer; allowing God back into my heart fully; not when I wanted or needed him. But because I simply just love him, and want him to be there.

I want this surgery to work tomorrow~ this be it, the end of the fight. Those of you reading this, many of you think the same. But I know very well by now that there is a possibility it won't work. We don't aim to give my brother a quantity-full life. We aim to give him a quality life. I know some of you reading this are going to tell me to have hope and faith that it will work out wonderful. But you need to understand that we need to prepare our hearts for the worst. I am not lessening my expectations but I am keeping an open mind…for the good and bad. When the days become so inconsistent, you need something consistent to hold on to. I hold on to God knowing and believing whatever happens tomorrow and the days to come is how it's supposed to be. That's not wrong.

I have been so darn focused on things that really don't matter that I've lost sight of all that matters (again, I am not explaining all; refer to my beginning blogs). But tonight, I feel strong; all that I care, whether I'm saddened or overjoyed, is I want my faith and hope to hold strong. I know I've mentioned before that things are done as a last resort but I really mean it this time. This is the absolute last thing we can try. There is nothing that anyone else can try that hasn't already been done. If any other options are brought to the table, it's purely another God given miracle.

Back to the hospital~ praying for no admittance

Another day, another let down. Today started out great, normal day running around the house doing things for mom. But the dreaded tone I try so hard to forget crowded my every thought. Nothing else in the world matters at this point except what I feared happening. You could hear the nurse downstairs with great dread and sorrow, repeatedly say "oh no" and "this isn't good." After hearing that about 3 times and the frustrated sighs I ran downstairs only to find Jacob's shirt completely soaked. That only means one thing~ his site is leaking. It's like those shows "ER" and "Grey's Anatomy." Envision the surgical scenes where the doctors are piling gauze on an open wound when operating. That's about what this looks like; you just see the gastric secretions pouring out. There are a pile of paper towels or baby wipes (really whatever you can get your hands on) and you just keep adding more to his site. It drains so fast and so much that it can be difficult to get it to stop.

Today is just too much for me so when all of this was happening, I ran upstairs. I couldn't take it. My mom had called in to check on how things were going today and the moment I had to tell her about my brother's site is a melancholy memory that I will never forget. It's almost immediately that the moods change; mom could tell my voice was quiet and sad. The moment I told her, her tone changed too. This has been a year long battle with Jacob. Everything we try just abruptly fails. No doctor, surgeon, nurse, or any human we've been in contact with thus far has ever heard of such a thing. You cannot treat this by the books, it requires out of the box, invasive, creative, problem solving. Little Jacob's life depends on it.

I just don't understand. I say that a lot because it's true. I really don't know why any of this is the way it is. Just yesterday we were a happy family, we had Jacob playing and without his oxygen, because he can breathe on his own now and it was a fun day. He had done the most moving he's done since before Thanksgiving when his stomach hurt so bad and yesterday everything was looking up. But apparently, those days are just not meant to last. They are taken from right under your feet, leaving you on the ground.

Tell me, what am I supposed to have hope for? Doctors have tried everything they've been able to think of. They are repeating past procedures that didn't work in the beginning but they're just so desperate that they will try anything at this point. If Jacob were just a few years older we may have been able to have the upper hand. If a lot of things were different, we could have this healed by now. But that's not how God has laid it out and that's not the way things are going.

For the first time ever, I will have no Christmas gifts under the tree this year. The only ones who get presents are my three younger brothers. And you know what? There isn't any materialistic, technologically advanced, thing that I want more than having my brother home for Christmas. Our biggest challenge is not that we cannot afford gifts but that we are trying to keep Jacob out of the hospital. The Christmas lights, decorations, and the tree are all very nice but they don't mean nearly as much as family does. Their value is hidden when loved ones are ill. Though I think I'm making one of the biggest requests for this year. And that's that my all of my brothers and my parents are home for Christmas. I don't want there to be any sight of stress or worry about Jacob's site. One day, is all I ask. It's not realistic to ask for a whole week so I'm just asking for Christmas…Christmas Eve would be wonderful too….but I understand if that doesn't happen.

Another Visit to the ER

It is said that you should spend part of the morning praying. It is quality time with God, for He is the only one who knows what the day holds for you. If I had known all that was going to happen today I would've hid under blankets and stayed there. What happened today was the cherry on top of the stressful sundae. I know, I'm sure that sounds totally lame but that's all I've got.

I walked downstairs at noon only to see that Jacob's nj tube was out further than it should be. It had dislodged and we didn't know how or why. Well, actually the nj tube is held by a specific kind of tape (the name escapes me). And it sucks, this tape doesn't hold anything down. It only holds down when it doesn't get wet. But the tube is placed so it is in between his upper lip and nose, so that's inevitable.

The big, crappy, part of the day is that the tube wasn't in the jejunum anymore. We noticed Jacob's tube feeding coming out of his open feeding site. That means, the tube was in the stomach and not his small intestine. The nj tube was put in Thursday. It is only Saturday.

My dad and I took Jacob to the hospital to get the tube placed back in. Recall in one of my previous blogs I said that Jacob hates this particular procedure and just cries. As soon as we got to Radiology and entered the x ray room he started crying and he wouldn't stop. He knew exactly what hell he was about to go through and he couldn't do a thing about it. What the doctor did was since the tube was already in his stomach he didn't want to pull it out and put a new one in. So he took a thin wire and put it through the tube. That enables the doctor to control the movement and direction of the tube by making it more rigid. Keep in mind though, it's not simple. Jacob has Prune Belly Syndrome so his anatomy is different (so they say).

I stood by Jacob's head and saw the doctor push the tube far up his nose and then pull it out and push it in and pull it back out. He had to have done this 50 times or so and every time Jacob became more and more upset (with good reason might I add). You can do a lot to me; break my heart, belittle me, punch me in the stomach 20 times, stick a needle in my neck, but watching my brother go through this misery is the worst thing I have ever experienced. Nothing~ no stomach pain, asthma attack, or biopsy will ever compare to what I saw today. In addition, this x ray machine is connected to a computer monitor and that brings up instant pictures of Jacob's abdomen. It makes a beeping noise after every picture taken. I watched the screen after every beep for several minutes and you could see the tube moving. The best way to describe it, is when you try to thread a needle. If the end is frayed and you try to push it through, it bends upwards and doesn't go through. That's what I saw on the x ray. The doctor would push the tube in and then when he tried to get it in the jejunum, it would just bend around another part of the small intestine.

It got to the point where the doctor said he wasn't sure he could do much better than what he got. He said that that's not where he wanted the tube and he wasn't sure it would hold but, he didn't think he'd be able to move the tube where he really wanted it. At that point I did something I was taught not to do; beg to God. I prayed over and over and over again. I didn't look away from Jacob because I didn't want to be a coward, he doesn't need cowards in his life. He's the strongest warrior I know. So I just kept asking God to please help him. But Jacob's cries were getting louder, his frustrations were increasing, and I kept seeing that tube being pushed in and pulled out. I didn't think about it not working; I kept thinking I know God is here, I know he's going to make this right. And sure enough, a few moments later the doctor said he got it; he got the nj tube placed better than ever before. By that I mean, this is the doctor who usually places Jacob's nj tubes (he did it last Thursday) so out of every time this was the best. Then, after it was in and they taped it, Jacob stopped crying. He literally calmed right down like nothing had happened a few minutes ago.

The hardest part of today was the moment we were all saying "sorry" to Jacob. What the hell does sorry do? Sorry you have to go through this….sorry you're in pain….I can say sorry all I want but I can't stop what has to be done and I can't stop the pain. The nurses can make as many sad faces as they want because they feel bad but they and I aren't going through this. Faces and words don't change anything. Jacob and I have a new thing where when I sing him a song, he pats my hand continuously. I tried that in Radiology and it worked for about 2 seconds. I even got the rest of the radiology team to sing "Jingle Bells" with me but Jacob didn't care. And why should he? He didn't ask for this tube to be dislodged; he didn't ask for his feeding site not to heal; he hasn't asked for any of this.

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…….