Another different day.....

In the last post I was talking about how they were going to do a trial breathing on KZ where they turn the machine somewhat off meaning he is breathing on his own but a little oxygen is still going in. He did so well in fact everyone agreed that he was more comfortable when he was able to breathe on his own. So they left him on that mode on the machine the whole day planning on taking the tube out the next day. So they tried taking the tube out and he immediately struggled to breathe. They put him in a c-pap machine and he calmed down and his oxygen level came back up. The problem was they didn't have a mask that would fit his tiny little face so every time he moved it would fall off not giving the pressure he needed to help him oxygenate better. So.....they were getting ready to put the tube back in and had the ENT(ear nose and throat) doctor come in and put a scope with a camera down his throat to see if there was any damage from when they put the tube in in Gillette, WY. When they did that they found that he had a granuloma (A mass of granulation tissue, typically produced in response to infection, inflammation, or the pressence of a foreign object) the foreign object being the breathing tube. So he said the best way for that to be treated is not putting the tube in and letting it heal with time. So they decided not to put the tube back in after all so they put the c-pap machine back on.a few hours later they checked his co2 and noticed it was going up, not only that but his PH levels weren't quite normal so they didn't want to risk anything and decided to put the tube in. I know it's confusing....and frustrating. So a couple days later he had another bronchoscopy and the ENT doctor removed the granulomas. They weren't sure if they should do this because with more and more irritation, granulomas grow back. So with Kaizen still having the breathing tube in they have been giving him muscle relaxers and things like that so he doesnt move and so the tube doesn't irritate his throat.

They were planning on taking the tube out yesterday but saw his oxygen levels were going down just a little bit, they got an x-ray and it showed that his left lung had collapsed just a little bit. So they decided to wait so they can get his lung healed and more oxygenation can be present. As of right now the plan is to try taking the tube out tomorrow and see how that goes.

A lot is going on and everyday is different. My emotions are in a whirlwind and I feel like I have no control. I pray and pray all day everyday that good will come out of this. And I think it will. Together we are strong and our main goal is that Kaizen will be happy. That's all we want. It's amazing how even under sedating medication he still tries to smile at me. I make a face and he gives me this grin and his eyes say "o mom if I was awake right now I would give you a laugh that would put you to tears."  I know I have said this before but there is just something about our little KZ that affects the lives of so many. He has this way of pulling on people's heart strings giving them the inability to control the love they feel for him........little stinker, controlling our emotions. :)

I remember wanting to start a blog long before I actually started one......I just got as far as trying to come with a title and all that and just decided I didn't have the time or energy to do it. When Kaizen was born I remember having a strong feeling to reconsider my thoughts........I now know why. Without this blog I would be taking the opportunity for Kaizen to affect so many away.  This blog isn't just something I want to do to pass time.......I truly feel like its something I need to do in order to truly fulfill our lives.

I appreciate all of you who read and appreciate my words, my feelings, my thoughts. I know Kaizen is so thankful for all of you and can feel your prayers. I know we are going through a trial that could potentially crush a family in pieces.......but our little family.......each of us........We are strong. We are faithful. And we will be courageous.

The road ahead.......

So......here we are......still in the hospital wondering what is next. I am not going to lie, it is really hard for me to write on the good ol' blog today, I sometimes wonder if it is ok that I even get on here and write. My sweet little boy is fighting, fighting for his life and it is so incredibly sad. It breaks my heart in a million pieces and I'm not sure if I or anyone will be able to put it back together again.

Not all of our questions are being answered, not all of our hopes are being supported. We are in the middle of facing THE HARDEST decision WE will EVER have to make in our entire lives! I know this.

Sweet sweet Kaizen Krew is still on a breathing tube, he is on very minimal support, but he is still on it. The doctors believe that he has a degenaritive brain disease. That his brain is slowly worsening and there is nothing they can do to stop it. He isn't smiling and laughing like he was, It seems like he's not recognizing who is mommy and daddy are and o how that hurts, how it cuts us deep. He smiled once and laughed a few times......it made me so happy, my soul smiled inside. The doctors aren't very positive. They are telling us that his neurological status will never be normal, that he may never talk, never walk, not live very long. That his future will be filled with hospital visits, surgeries, ultimately sadness. They are going to do a trial breathing today, where they leave the tube in but turn down the machine and see how he breaths on his own. They are hoping to take the tube out tomorrow if all goes well. It is possible that he will fail and have to have the tube back in........bringing up again the decision that will affect our lives forever.

I know some of you are thinking how amaizing it is that we are so strong, but I must correct you.......we fall apart at times. We hurt so much it is indescribable! I would never ever wish this pain on my worst enemy. Josh and I have talked about life without him, it's not enjoyable at all to talk about as I know all of you know. It's hard to imagine because we don't want to believe we have to go through it, that we have to live it. We aren't afraid of where he is going, I think it's safe to say that our faith is strong enough in that aspect. Whats scary is how WE will be here left without him, how we will feel with something so incredibly important to us missing. But is he really missing? Is he ever really gone? No. Not at all. We will get our chance to raise him again. I don't want to be negative and say that he is going to pass away. But I want to share how we feel about that right now if it should happen. We don't want him to suffer, we don't believe in that. We come down to Earth to obtain a body, maybe it was God's will that his time on Earth didn't need to be long, that he has already fulfilled his calling. Only time will tell. For right now, we are going to take my dad's advice and live day by day. Love him, talk to him, let him know how much he means to us, how much so many people have so much love for him. It is amazing how many lives this little angel that we get to call ours has affected. Anyone who comes in contact with him feels a connection, feels a spirit from within him that I just can't describe.

getting geared up for another eeg

his army helmet...:)

 

 

I am not sure when I will get a chance to write again, so I wanted to update you as much as possible for right now. Thank you for keeping our family in your prayers. Thank you for caring so much about us. It means the world to us. God bless.

Little setback....

So......you may have heard we are back at Primary Children's Hospital. We were discharged on Saturday, Sept. 1st. We stayed in Coalville until Tuesday where we left that afternoon. We drove to Gillette, Wyoming where we decided to stay the night. we had a scare on the drive, Kaizen turned a pale color, his lips went blue and he was trying to throw up but was too weak. Thankfully they sent us home with a suction machine so we pulled over suctioned him and turned his oxygen up. Since they sent us home with an o2 monitor we saw that his oxygen levels went back up. Thank goodness! Ugh he scared the crap outta us! When we got to the hotel he was still really weak and about 5:00a.m. the next morning he threw up some brown stuff. We were getting really worried as we were packing everything up to head to Sidney.....he was very very weak.......too weak to even cry. He was trying to throw up but was too weak to do that. He slept for over 40 hours straight, so we decided to take him in to the Gillette Hospital where they then decided to put a breathing tube in him and fly him back to Primary's. I flew with my little angel and we arrived here last night.

They are thinking he has the rhinovirus......which they can'treally give him anything for, they can give Tylenol that can help with lowering his fever but other than that they can really just support him with things until he gets over it.  His fever at one point was 102 but has come down to 100.8 it kind of goes up and down a little bit so they are keeping watch. Weare currently staying in the PICU.
I don't have my lap top with me so I am just using my iPad to do the posts for now....so you will have to bare with me if all of this is out of wack......hopefully it even works. I can't scroll down to the bottom to end this post so I will write it here...... Thank you all for your thoughts and prayers! I will keep updating a trying to stay positive! I hurt but I'm not broken! :)

My feelings right now......well they are better than yesterday that is for sure. My heart is still hurting, it's aching, it's sad. The thought of loosing him is just unbearable to me, I just CANNOT handle it. I wish I could just go to bed, wake up and have it all be just a dream, just a nightmare really. It's crazy how just a common cold to us could be life threatening to a little innocent child. It is extremely hard watching your child struggle and not being able to do anything, anything at all to help him.....to lighten the struggle......take away the hurt. I just wanted to take him home with us.....sit in our rocking chair until I rocked us both to sleep.

Home. Sweet. Home.

Yay! We get to go home today! Well a temporary home anyway. We are going to stay in Coalville at least until Monday or Tuesday just so we can get everything set up in Sidney like home health, early intervention, and all that good stuff before we arrive. Kaiz will be going home on oxygen but very very little, like no joke he is on .10 of a liter which the next click down is 0 so......hopefully he won't be on it for long. He is going home with a feeding tube as well as a little monitor so we can keep track of his oxygen levels, (it doesn't have to be on him 24/7 though...), and a suction machine so we can suck out all of his mucus if there should be any.

I gotta tell ya, we are a little nervous to go home with the feeding tube but if it gets him to gain weight than we will learn to be comfortable. I am so excited to get this cute little muchkin out of the hospital and back to living a........semi-normal life! I can't wait to see his reaction to the outside world......the world he loved so much when he was out in it. It's going to probably be a little tuff taking him out a lot with all the stuff and his cute little face will have tubes on it........but......... I mean look at him........he is sooo rocking those tubes..... :)

I forgot to add a few pictures on my last post.....some from the reunion and some other random one's.....

Some more anniversary pics :)

a heart-shaped fried pickle at Texas Roadhouse......"love is in the air.....everywhere you turn around"..... hehe

a charicature we had done at the Ronald McDonald house

So about the Ronald McDonald house........it's a house that runs on donations and provides a place to sleep, eat, shower, and just hang out to people who have hospital needs or to people with children or others in the hospital that live far away....you have to live at least 35 miles away or more to stay there. It was really nice to stay in at night while we were here...... There are a lot of rooms, I'm not quite sure how many, but each room was decorated for the first child who stayed in them when the Ronald McDonald house was first designated. This was our room.......

The quote on the wall says:

God grant me the Serenity to accept the things I can't change,

the Courage to change the things I can,

and the Wisdom to know the difference.   by Reinhold Niebuhr

A quote I'm sure almost all of us have heard before but it seemed like it was meant for us,

we were meant to stay in this room.

We are so so thankful for all of the wonderful and caring people who have been keeping us in your thoughts and prayers. I am not sure if you will ever know how deeply grateful we are for each and every one of you. Thank you all for helping us get to this point........now lets go home. :)