A spiral downward

I want people to understand something and I feel that it needs to be clarified before I go even further. At the moment, it is difficult to continue to update about Jacob. Last Saturday his condition took a turn for the worst and is continuing to spiral downward. It is not a lack of communication it is simply that I haven't "conquered" the reality yet. Some may argue that that is not possible. But truly it is, it's fundamental to the quality of your days. When I find myself  worrying more about the future than enjoying right now, I know I'm not where I need to be. All it takes is a phone call from home, or for my mind to wander for me to tear up. And that cannot happen, I'm telling you it just can't.

I need to be able to get to the point where I accept what is, and make the best of what I have in that moment. Forget the school work, the stress of adulthood, the jealous people....I can handle that. I cannot handle this life/death deal quite yet. I guess in some ways I'm not supposed to, I'm all the way in North Carolina and I am no use to my family here. My greatest support for them is praying. I just keep telling myself that God has brought me back here for a reason. He's taking care of my family back home so I need to trust him and continue his work elsewhere. He doesn't need me to be at home, he needs me to be here.

With that said, there is absolutely no way that I would have been able to come back to school and carry on a "normal" life without God's strength. The one who is there for me during the lonely nights is God. And with that, I have a millimeter more of hope and strength than I did Monday. I'm holding on to that with dear life. It's not possible to come out on the other side; a better person; closer to loving like Jesus does without Him. I mean, He is the source of all of our happiness. That's my positive thought for the day. It's short and sweet; indeed things are hard again but they won't stay like this forever.

Bad news

I said that no news would be good news, so this news is not good news. I got a call from mom today about Jacob. We were doing so well with his site and the surgeons were so pleased that they were planning to put the mic-key button back in! In order for that to happen he needed to 'do well' for lack of a better term, with having his current tube clamped off. Every night for 4-6 hours he needed to tolerate the blocked access to the farrell valve bag. This would insure that his wound was healed enough to stop the flow of gastric secretions. However, I received the news today that doing that has put him right back to where we were at the beginning of the summer. My mom is having a difficult time stopping the secretions from reaching his skin...they are soaking through his dressing, the pad over his dressing, the sponge on that, the receiving blanket on top of that, and finally through his shirt. The last time this happened he went into surgery and they found that the secretions had reached the internal tissues. I'm kind of lost at this point; first day back to school, which is a break for me and I get this news. I'm not sure how to think right now but I can't help but wonder if my baby brother is ever going to get better. God has put us on a roller coaster for sure this summer; my family and I have expanded our faith and wisdom in more ways than I ever thought was possible. I live life in a new light and treasure every day. Yet through all of that, there is still a struggle. I'm nineteen, I don't have all of the answers, if any. My faith is concrete but I still deviate from the right path; I still question why Jacob isn't better yet.

Short and sweet

For the past two days Jacob's secretions have been less thick. I honestly think it is the weirdest thing. We haven't changed his feedings, what he gets, and what we do. It is all the same but for some reason his secretions aren't as thick and dangerous. In part it may have to do with his trilogy (the ventilator) he's on at night but that still doesn't account for all of it. At least, I don't believe so. He's also not as unstable as he has been. When he throws a plug it only takes one cycle of the cough-assist (5 inhales and 5 exhales) to bring it up. Or, a little bit of suctioning. I thought he was getting in trouble last night but his heart rate didn't climb as fast and his oxygen saturation was steady at 100. He definitely had a lot of junk in his lungs but he responded more positively to it than oppose to Sunday. With that said, that doesn't mean that we can treat these plugs as less of a rush per say, but in essence we do have more time to act and it's also not as hard on his body.

As far as his site goes, there are no plans to do anything at this time. We have both surgeons conversing on what is best for the child and evidently they haven't come to a decision yet. The dressings have been wet but a new home care nurse just started this week who is very unfamiliar with what has to be done. Not wrapping the binder tight enough, keeping the phalange of the tube tight, the balloon inflated etc...that all factors in to the release of gastric secretions. Believe me, I'm not even seasoned on how to change this dressing. Respiratory wise I can handle anything with him and I'm very comfortable in what needs to be done. In an absolute emergency I could probably do it for a temporary amount of time but I'm no expert. It's quite complicated and there is a lot involved. Overall, there's not much more to say, we are in the middle of a waiting game. It's definite that no surgery will happen before mid August, that much I know. Nevertheless, both doctors have a plan. A few weeks ago, even a few months ago, there was no plan.

At a crossroads

This is strictly a medical update on Jacob. We are having some reserves with going forward with the surgery now which has certainly complicated things to the nth degree. I'm not quite sure where to begin because there is a lot of ground to cover in this post. I suppose the best place to start would be last Sunday when he was in my care for most of the day. He was stable most of the day but when he was unstable, it was quite serious. I thought I was going to lose him twice. I've talked a lot about how dehydrated he gets with the site being open and the binder that constricts his breathing. Combine both of those factors and you have yourself a breeding ground for plugs. That's exactly what happened to me on Sunday with him. The plugs were so thick that they blocked his airway off completely. Usually the cough-assist machine:  

and the suction machine:

are used to pull the plugs out. The problem Sunday was that they were too thick for the machines to pull out. I knew I was on borrowed time because he wasn't moving, his eyes were starting to close and he had no airway. I'm going to say that by a miracle of God alternating between the two machines and lavaging (figure 3), I was able to get the plug out of his trac. They still did not pull it out into the tube like usual but the suction had enough power to suck the plug at the tip of the tube; just enough for me to get it out of his trac and clear his airway. It happened twice to me and it's becoming a regular occurrence as long as he is in that binder. Though, we cannot remove the binder because that is what gives us minimal leakage on his skin from the gastric secretions. If we were to take the binder off (we have tried under direction from the doctors) the secretions will leak on to his skin and burn through several layers of his skin.

The set back with surgery is evidently the problem with the surgeons; as they have different opinions. However, I didn't mention that Jacob cannot have narcotics. Since he is a spinal cord injury, narcotics can be fatal to him. I can explain the physiology behind that in another post. So I ask you to consider his options; this surgery will cause him so much pain that he won't breathe on his own. Then you have to factor in the fact that he cannot have narcotics to relax him from all of the pain and anxiety. Doctors are weighing out the pros and cons as we are. Is it worth it to put this little boy through so much pain and not be able to do anything but wait until he recovers *if* he recovers? The pain can be so bad that it will spike his heart rate, temperature, and lower his oxygen sats. Or, is it a possibility for it to heal on its own? Science has recently come out with a brand new feeding tube similar to Jacob's current one. They are so new that they made one especially for Jacob because they weren't available to surgeons yet. However, after things got bad we opted out of the new tube until he settled down. So with all said, we are at a crossroads. Pain can have a negative affect on the body, possibly worse than this "healing" site is having on him right now. I have less than a month left at home until I go back to school and it doesn't seem as though this surgery will be happening before then, if at all.

Delay on surgery but not on hope

Jacob isn't doing so well anymore. This week, everything kind of fell apart. There was that one or two days of pure relief that this surgery was going to save my baby brother. Our surgeon said he would have a nurse call and schedule a time in the next week. Except we never got a call. So we called them and all of a sudden, we have his receptionist telling us that his new surgeon doesn't want to do it before he goes on vacation for three weeks. He refuses to use his on call time and has booked it for the end of August. Jacob has been like this for 10 almost 11 months. It's not my place to talk negatively about this surgeon so I won't. But that's ridiculous. He also told us that this would be a very simple surgery and my brother would be out of the hospital at most five days after his surgery was done. Now, we are learning that in fact this is not a simple surgery. The kids who have this surgery done are in so much abdominal discomfort that they don't want to breathe so they are put on a ventilator to do all of the breathing for them. That's no "simple" procedure at all. If I'm not mistaken, my brother has only been off a ventilator for 1 and a half years...maybe 2 and he's four. You cannot just put a person on a ventilator and pull them off expecting them to pick up breathing. It is a process, they have to be weaned off the extra support.

With that said, we are no longer going to have this surgeon perform this surgery. We are extremely close with our other surgeon at our main children's hospital and are hoping and praying that she will do it. She has put this off so long because it's not an easy surgery. Though that's not the part that is making me a bit antsy. It's that Jacob is declining. His dressings have been saturated and Wednesday we found bleeding around the site. That tells us that again we have gastric secretions leaking out and they are burning his skin, very rapidly. Soon the secretions will burn through internally, they may have already started to.

For the past week, I've taken a picture of the sunset every day. When I'm feeling kind of down I go outside and stare at the sky. If I simply cannot be satisfied with telling myself to get over it I look at the photos. My mother rolls her eyes at me which is okay because that sunset is a creation of God. He puts beautiful things in our life every day, if I really want to be risky, every moment. Although that sunset doesn't take away some of the worry and stress it makes me stop and appreciate what is around me. It's not just the sunsets either. It's the insects too. I hate bugs, I really do. For me to come out and say they are beautiful is like me saying I don't like shopping. But I was outside most of the week painting and I came across this spider and his web. It was an orange spider and I looked at its web; the way he spun it and the shapes. It was amazing. Then, this huge beetle looking thing crawling by me, red and yellow colored, with black stripes and I thought it was the cutest thing ever. My mom says I'm too sentimental...maybe I am. But what's wrong with appreciating the life around you? Those sunsets put a smile on my face that wouldn't have been there otherwise. The spider and his web made me marvel at the creation of such an intricate design.

You can think I'm crazy; that I'm not taking life seriously. But that was the problem, I was taking life too seriously. As far as I'm concerned anxiety is evil. It takes up space that should be filled with faith, hope, and joy. That doesn't mean you can be perfectly happy every moment..not at all. I'm perfectly content to say that I'm quite nervous at this point in time. My brother is in a lot of pain; he won't roll on his stomach, he cries out at night, and his heart rate will go up if you don't keep up on the tylenol and ibuprofen. However, there is no doubt in my mind that Jesus is with him and my family. I know God has this, it's playing out exactly how it's supposed to.

All in all though, I'm human, I want to be able to enjoy every single moment of life...find happiness in everything. But right now that's not possible, I'm not sure I'll ever get to that point. But it won't stop me from trying. As The Afters say, "Here's my broken Hallelujah." Jacob was here today and smiling...the whole family was. I haven't seen that for a few days and it was glorious to be a part of.

Quick update on the new doctor

Jacob met with his new surgeon today and he will definitely be going back into surgery within the next week or so. His surgeon told us that his site will never heal on its own, contrary to what our previous surgeon said. In a way this is both good and bad news. More so, just really tough to take in. With this surgery they are going to have to close up the hole in his stomach all together; without any tubes. Then, the surgeon will create a new stoma to put a new tube in, that's assuming the sutures hold his old stoma closed.

Another problem lies within the fact that he has a trac. I've mentioned before that he is extremely prone to pneumonia because he cannot clear his lungs by himself; he requires a bit of extra help from the cough-assist and suction machines on top of moving around. Since he will have to be in the hospital about five days after his surgery, the real battle becomes fighting to keep pneumonia from forming (we won't be able to take him out of bed.)  Our last surgeon said that this is a "major surgery" but I guess we won't know that until the day he goes in. Then we will know. So until then, I continue to pray for this unknown journey that is approaching. I trust in God completely and know he will take care of this, no matter what happens.

You deserve to be happy

When something in life isn't going your way~ your significant other just ended the relationship you tried so desperately to salvage, you fail a test, you don't get the job you want, your top college doesn't accept you, you lose a best friend, or you are simply just having a bad day....I want you to think back to this song. It's very personal to me as it relates to my thought process I go through every day. It reminds me that I have everything that I need in this life and so do you.

In my opinion, the simple life is the best life. And believe me, that's not something I learned over night.  Am I going to have hard times...yeah. Are YOU going to have tough situations? Of course, but you will push through them and come out on the other side with faith and a true understanding of hope. It might take a bit of work on your part but it will be worth it. God doesn't offer empty promises, he's there whether you want him there or not and hopefully you do....you need Him....through the good and the bad times.

I'm writing this post tonight because my life is so different. Suddenly, having my friends and family happy, safe, and healthy is what makes my day. I don't need superficial, materialistic items to supply my happiness. That is an empty form of joy and it's nothing like what the Lord can give you when you share his love and allow yourself to see and embrace His love for you.

With all said, my brother is doing well right now....he was stable today. But there is someone else who is near and dear to my heart that is currently undergoing testing for cancer. It came out of the blue; there were scab-like markings on their scalp and they knew they didn't hit their head. These markings have been there for a few months and something alarmed them to get it checked out. I pray to God every night that it's not cancer but it's out of my control. With all considered, don't view this song as a negative perspective rushing you to live your life. I want you to see it as a song showing you the most basic things in life taken for granted hold the greatest meaning when you really take the time to appreciate what's around you. It's like what Gillaume Apollinaire says, "Now and then it's good to stop in your pursuit of happiness and just be happy." Don't always focus on what is going to make you happy, focus on what is making you happy this day, because what (and by what I also mean who) makes you happy today may not be here tomorrow.