Looking on the bright side

First off I just want to make note of my name change. People have been finding me on social networking sites and I've had some issues with that. I realize some of you continue to visit this blog on a regular basis, but not all do. This is merely for my protection.

Now on to the more important update. I feel that I need to lay off the heavy posts for a bit and focus on some good news! I know I constantly stress that it's important to live in the moment. But I also know that looking forward to the future is not necessarily a bad move either. Sometimes we all need an extra "push" to be able to focus on the other side of the rainbow.

So with that said, I have officially made my decision about where I'm returning to college. I was given the option to go to school in New York City or Boston, but I have willingly chosen to come back to UNCC!!! I couldn't be happier with my decision! At first I was very skeptical about returning to Charlotte but through constant prayers I have come to realize that this is where I need to be. The other part of the good news is that I now have a car to bring down there with me! It was detrimental to not have a car for my first year. I mean, I made it work as best I could but it was still awful. So now that I have one I can become more active in the city I love!

In my opinion, I feel that having some place to call home is what excites me most. I was going back and forth between home and Charlotte so often that I honestly became confused as to which place to call "my home." In the beginning of my first semester I was always homesick and then I had a boyfriend who wanted me in Charlotte. But I wasn't at the point where I wanted to stay in Charlotte. Then, towards the end of the year, I started to attach to North Carolina. And then just decided I should transfer closer to home. I truly believe I was just at a crucial learning stage in my life. Those dreaded words "growing up" come to mind when I think about last year.

All in all, now that I will have a car, know what to expect having been through my first year of college, and have settled in a state more permanently, I think that next year will be a bit better than last year. That's not to say I won't be homesick, I definitely will be. It will be even harder if Jacob is still sick like he is now. But, I am confident in God; that Jesus will be with me every step of the way.

Longing for healing

I yearn for the day that my brother will be okay. I'm sick and tired of living every day to the fullest because I have to. I want to live every day to the fullest because I choose to. A memory with Jacob not being sick is so far in my mind. I honestly cannot think of that day...how it felt; what it was like. It's like the feeling of winter. Snow is constantly falling and covering the ground. Everything is dead and then when spring comes around, it serves as our reminder of what we didn't have in those winter months. I so desperately want to see those flowers spring from the ground, be reminded of the vibrant colors that come with a season change. Today is one of those days that no matter if the sun is shining, I listen to an upbeat song, or watch my favorite movie, the sadness does not lighten. I'm not depressed, I''m just frustrated, confused, and tired.

 I woke up today feeling like someone had taken cinder blocks and put them on top of every part of my body. My body feels heavy, as if it takes work to lug this thing around everywhere. Watching my friends live a worry-free summer almsot makes me mad. They are going to the beach, waking up with no plans for the day, and sitting by the pool sipping iced tea with not a care in the world. Their only concern is that they don't get too much sun. Then there are others that have their fantasy summer loves. I can't even imagine....it must be wonderful. I guess what counts is even though I feel drained spiritually, I still have a few drops left. A few more than I did the last time life was so low.

The other day, I had an extremely tough time. Something had happened and I had failed to "love like Jesus does." I'm not going to go in further detail because it's personal. Nevertheless, I was sitting in our dining room, staring out the window. I wasn't in the position to cry out to Jesus so I kept it to myself and just prayed a rosary. I longed for some type of support because I really had no idea how to fix what I had just done, more so what I hadn't done. All of a sudden, there was this little fruit fly that flew on to my chest. Now it doesn't take a rocket scientist to figure out that I don't like bugs. Anything made with chitin I do not like. I've seen enough "Untold Stories of the ER" to be fearful of these little critters. They can fly into your outer extremities and it's just disgusting. So that being said, even the smallest fruit fly would make me get up and leave. But this one didn't. In fact, it felt like this little fly had been my friend forever; that I've known this bug my entire life. I cannot explain it, I really thought I was crazy. With everything going on in life, it wouldn't surprise me the least bit if I became a little insane. But because this little fruit fly served as my comfort I asked God. I basically told him exactly what I just wrote. At that point, I had gotten up because one of my brothers got into something they shouldn't have. And when I came to sit down in that exact same spot it was gone. So again, I asked God for some type of comfort and the fruit fly came back to my chest. It hovered around my heart. Now I know what you're thinking, this couldn't possibly be anything significant. But someone last year had told me that there was no such thing as coincidences and he himself didn't believe in them. That has stuck with me ever since. There was utter peace and grace that washed over me in that fly's presence.

I knew I was crashing ever so slightly towards the beginning of the week. I was hoping that every new day I woke up, I would shove this feeling down a bit further and rise above it. Jacob is really not doing well. We are allowing him "tummy time" because we've exhausted all of our recourses. It's the quality of life that makes a difference for him. We (my family) really thought that we were getting the upper hand on his site. But he's crying out in his sleep and his dressings are saturated again. His site looks awful; you can tell the secretions have reached his skin.

 As I type this, I'm sitting across from Jacob's bed downstairs watching the kids play. Jacob just looked up at me and smiled...is it okay to cry in front of a child? That smile of his could melt the ice off of anyone's heart. It's just so pure. It can be a challenge to be happy 24 hours a day and sometimes, you fall. Today as I type this blog, I have definitely fallen. When tomorrow rolls around, I've got to pick right back up as if nothing is wrong and continue the day with a smile on my face, because one day, everything will be okay. I'm just not sure how soon that day will come. So with that said, I have to cut my losses and remember that God gave me today. When I finish this post, noting can be wrong. Happiness and fulfillment become the remainder of the goals because of Jacob. Regardless of the pain he may be in, he still manages to smile like nothing is wrong.

Not the best news today

I'm figuring out the key to life is balance. Balancing your faith, family and friends, academics, work, and health. My blood sugar is low, my electrolytes are low, and my protein is low. They are so low that when I replenish them, there are no reserves after they get used up. So I'm constantly eating to try and keep them up. I'd like to avoid any hospital visitations as long as I can. 

Speaking of hospitals though, Jacob is going back today which is a major let down. Earlier in the week we had an issue with his farrell valve bag draining but we thought we fixed it....we did, for about two days. His wound looks awful today because the secretions can't drain into the farrell valve bag so they drain out the stomach. That then causes those highly acidic secretions to begin eating away at Jacob's skin. It only takes a couple of hours for these secretions to do damage because the tissues are newly formed and oh-so sensitive. Jacob's surgeon thinks that the tube may be kinked or bent inside his stomach. I have no idea how that can happen so as far as offering an explanation for it, I do not have one. 

In addition, we just started him on BiPAP. In case you don't know what that is, it's a ventilator to assist him with breathing. He can still breathe on his own if he chooses but the BiPAP forces a specific amount of air into his lungs. That way, if he is not breathing on his own as efficiently as we'd like the BiPAP will force more air in. His pulmonologist seems to think that he is so dependent on oxygen because he has a binder that may be compromising his breathing (refer to blog posts 1 and 2 for binder description). It's not good news per say to have him on a vent, but it is only temporary. There do not seem to be any additional issues with his body that may be affecting his breathing.

A legit excuse

This is more of a personal update~ I have been having some issues with my health lately. Nothing life threatening or anything but significant enough to play havoc in my life. The emotional and physical stress of the stable/unstable status of Jacob has definitely impacted my families health (not just mine). As I type this now I'm going 5 hours trying to get my blood sugar to stay up. The impact stress has on my eating habits is quite large. I've been losing weight because (tmi moment): everything I eat comes right back up. I don't throw my food up on purpose so don't jump to conclusions. There isn't enough room for stress, fear, happiness, relief, etc...all of the emotions that come day-to-day. My body is clueless as to how to deal with it all so it finds a way to keep it from being more overwhelmed (I suppose).

 Today I actually did eat but for some reason not enough? So my mother seems to think. I've never been so lightheaded, lethargic, dizzy, and nauseous in my life! This is miserable; nothing good comes from feeling like this. So, with all said, if you do not see anymore blog posts for several days, just know eating comes before writing! It doesn't mean that something bad has happened with Jacob.

To end this post if you ever need a pick-me-up song for your week....these are the ones for you. I'm not going into detail about each song. If you want my personal opinion you can message me. I'd be more than happy to explain! Have a lovely day today and don't forget to pray to God in your times of need or just to thank him. After all, He is the one who loves you more than anyone on this Earth!~

The most plentiful life

Through this journey every day becomes more special than the last. Jacob had an okay day today, nothing much has changed.  It has been a busy weekend with my family; I've been stepping in for mom since she's been working back to back 12 hour shifts. I was extremely tired last night, I had definitely reached what I thought to be my end point....children tire you out. But, then I thought about Jacob and the suffering he endures everyday. There is also a little girl who has stage 4 cancer that I write to and I think about her and how she's losing her battle very rapidly. Or, children who don't have loving parents and are abused every day. The fear they have walking around in their own home. So sure, I can be tired and overwhelmed but my family and friends were alive and well that day. I couldn't ask for more......

In essence, it is evidently very important that you understand how precious today truly is. As hard as it is to be on edge every second of everyday; not knowing how Jacob will respond; I can honestly say that this is the best way to live. Obviously not Jacob being so critical, but more so living in the moment. You see your life in a whole new light, I cannot write enough words to describe how much more meaningful life has become for me. The simplest things become the most beautiful and noteworthy.

This household just had a very different feel today. The heavy, dark, suffocating feeling has been lifted.  God has a very strong presence here, much stronger than usual. And I can say it's always strong. So for me to say that is notable. I just feel in my heart that through all of the fear, restlessness, unknowing, sadness, and temptation to stray from God my family has been given a wonderful gift. I cannot do this blog post justice. Living in the moment with God next to me is.......is.......the most blessed, glorious, and plentiful way of life. I wouldn't want it any other way. Even though it is close to 1am I feel like the sun is shining down on me.

The smile I recieved from my dad on this father's day was priceless and it meant the world to me. That's what I mean, my father is alive and I got to spend all day with him and the rest of my loved ones. I mean really, there isn't anything else that could've made this day more memorable. Indeed there are things that I wish to have and things I wish to do but I know in this moment, that is not what counts. I will be in that time of my life soon enough. In this moment right now, as you read this text I can tell you that if I were to die tomorrow, I would be more content than I was yesterday. Every day is a new chance to improve and live life even more abounding. Without fail, regardless of the circumstances that day, it's still a good day for what/who I have been blessed with. I like to call it "severe optimism."

Turning blue in simpler tems

I think it's important that you understand exactly what is going on in simple terms. I'm a bit scatterbrained at the moment if you haven't noticed by my writing. Yesterday as you've read, Jacob stopped breathing. He stopped because he was so dehydrated that he couldn't "liquify" his secretions in his lungs enough to cough them up, which caused a plug in his airway. It's severe anytime it happens but yesterday we had a difficult time bringing him back. My family and I have been trained to deal with medical emergencies and they have certainly occurred but in all our experiences, they haven't been this bad. Jacob's dependency on oxygen has significantly increased compared to the past year. Usually he only needs 2 liters but lately we have had to have him on 4 liters of oxygen. If he were to require anymore than 4 liters, he would have to be placed back on a ventilator.

In addition to his resurfaced pulmonary issues, his stoma has enlarged. The pressure of the balloon and the disk that hold the tube in place were too much (so I'm gathering) which caused the expansion of the hole. If you want me to be honest, we are basically back to square one again. His surgeon is worried as well and when she worries, we worry.

Turning blue

Yesterday Jacob stopped breathing. I was going to post about this last night but I was sick myself. Since we have a farrell valve bag collecting the gastric secretions, we need to replace those secretions with fluids and electrolytes to keep him hydrated. With that said, it's a daily challenge to keep him hydrated and if we miss even a dose of Pedialyte, it can have severe consequences on his body. His GJ tube has three ports that branch off; there's the feeding port where tube feeding goes; a med port where we put his medications; and a balloon port.

Nothing goes into the balloon port but you can access it to either inflate the balloon or deflate it. The purpose of the balloon is to hold the GJ tube in place. Yesterday, his medication port kept popping open and as a result, Jacob lost a lot of his tube feeding. Although the med port and the feeding port are different, they both connect to the same place. In other words, there is equal access to each port. So, when his tube feeding goes through his feeding port and the med port opens, the tube feeding will leak through the med port back out of the stomach.

There is no way to replace lost feedings, all we can do is try to replace the lost feeding with Pedialyte. Usually when we have a problem with the med port opening we replace the ports. However, our shipment for some odd reason didn't come on time. We got a call from the company that the order was never written down. Even after I specifically talked on the phone with the manager of the company and placed the order myself because mom was out. And I even had the manager read it back to me....but we won't go there. Nope.

The significance of all of this is since Jacob didn't get a lot of his feeding yesterday due to the constant leaks he was more dehydrated than usual. Lately, as soon as his day nurse leaves we run a full bag of Pedialyte through. But since he he was already dehydrated, he was already in trouble trouble before we could get that in. In addition, as I've mentioned before, he cannot cough like the rest of us so we have to help him cough up secretions in his lungs. When Jacob becomes dehydrated, those secretions get hard and don't come out as easily; this then causes what we call a mucus plug. These are quite dangerous as they can block the airway if not noticed in time.

I've talked a little bit about oxygen saturation and heart rate; what's ideal and what is a sign for trouble. Yesterday evening, Jacob could barely hold a sat of 93 and his heart rate was around 165 and climbing. At that point my mom was by his crib and my dad and I were fast approaching; I noticed that his nostrils were flaring (one of the sings of respiratory distress). Just by looking at him you could tell he was working really hard to breathe; he was sucking in his ribs and using every abdominal muscle to suck in air. Evidently this is just an estimate but I'd say 30 seconds after realizing he was in distress he desatted. His oxygen saturation continued to fall and reached 81. His lips turned blue and his eyes rolled back into his head. My mom, dad, and I were scrambling around getting all of these different machines to try and get him breathing again. The one thing that we rarely ever result to (it's been years) is something called an ambu bag:

If you've seen any type of medical show then you know the term "bagging." This is what they are referring to. The only difference for Jacob is that it goes on his trach and not his mouth because the trach is his main airway. We rarely have to result to this type of life-saving technique. We have certainly had our fair share of medical emergencies at home with him but they have never been quite this bad. We can usually bring him back a lot quicker than we were able to yesterday. The ambu bag essentially breathes for him. You manually have to squeeze the bag of course but that replaces the air that he can no longer take in. However since he had a mucus plug, it did no good for the ambu bag because air couldn't get past the plug. There is another technique and it's called "lavaging." When you "lavage" Jacob it's nothing more than putting a little bit of saline down his trach to moisten the secretions, which then allows someone to suction out the plug, and that is exactly what happened. We were able to suction the plug out and got him to breathe again.

But his struggle doesn't end there, this morning my parents found a problem with the balloon (mentioned above). It wasn't holding which caused it to come out and spread open his opened wound on his stomach. It had been doing so well and the dressings were staying dry but because of this obviously unexpected issue with the balloon, his hole that was healing so nicely has now reopened. For now, there are no gastric secretions leaking out on to his dressing so we count our blessings there. But that doesn't mean, like I always say, that it cannot happen. Again we sit here and wait, hoping and praying for the best. He was supposed to go back to school next week, it's been months.

So far so good

Time is running short so this post will be short. Jacob is a happy, smiley four year old. He is a long way from recovery yet but he's in a lot less pain than he has been. We are all holding our breath because his dressing has been dry. The surgeon actually placed a farrell valve bag which is what the gastric secretions drain into instead of on his skin. We were still having problems with secretions draining around his site but thanks to God, out of nowhere it stopped. However, lately he hasn't been draining as much into the bag and the hole is not small enough to not drain at all. So, we worry if the secretions aren't draining in the bag because they will be on his skin. But today is a good day, I have no problems to report so I'll take it for all it's worth. If something happens tonight or tomorrow we will deal with it then.

For now we are just pushing on through with our lives. I'm taking one of the three tests I need to tomorrow in order to obtain my driver's license before we leave for Disney. I've also started a charity for foster children that keeps me busy. In addition, I'm working on my job certification for a particular company so when I go back to Charlotte I can get to work within the first month of returning. I've got an apartment down there, a car, and soon to be me! I'm excited to go back, I know it's where God needs me to be and I'm thrilled to continue his work down there. But that's as far into the future as I'm getting into, I went too far anyways. Today isn't even over yet; I'm still working with today's events haha!

So with that said, I hope you all are enjoying your day~ all is well here for now!