Follow the Yellow Brick Road

Can you imagine being told that all you had to do was follow a road and you would get everything you ever dreamed of? I feel like thats what has been happening here, after finally getting out of ICU we are on this road to the Emerald City of Health for J. Even making plans for this whole interview today and figuring out how to get the girls to see her. Yesterday was a bummer because while the plan was for them to come things didn’t work out, still she did get to talk to the girls and that helped.

Several good things did happen yesterday, J had Physical therapy and actually was able to put her feet on the floor. They changed her diet from thickened everything including water to real food that was a huge deal for her, and she was able to sleep for a while off and on throughout the day. She will go from here some time in the next two weeks to a step down resident facility for phyisical therapy and then to her moms and then home hopefully by mid FEB, the mid feb thing is my hope this is NOT a dr’s time line.

Then last night it got a bit scary and it is making me second guess this whole trip. After they did some routine stuff J had a hard time catching her breath, said it felt like an elephant sitting on her chest. I know this feeling as I have asthma. She got an x ray this am and they did some counts and while I know that we agreed for this short trip home for me for an interview and for a chance to rest I’m worried about it now.

Please pray that the whole thing goes the way it should and that it’s not a huge mistake for me to leave for this time. I desperately need the rest and the chance to be out of here for a bit so i can be strong for her but I also need her to know I’m not abandoning her.

The Wizard sent the travelers on a quest when they got the the Emerald City, showing us that nothing is free. I know that J’s health is not free I know it has to do with her and with prayer and her doctors and my ability to be here and help her after the hospital. Lets just hope when I get to the end and am faced with the witch whatever that witch may be there’s a bucket of water handy.

I get knocked down, but I get up again

I am not sure what kind of hopeless feeling is worse. Now don’t freak out I’m not saying I’m not sure what patient type is worse. This is all about feeling inadequate to the task. See there are two types of helpless in this situation. There is the helpless that I felt the first time I saw her when I walked into the hospital two Sunday’s ago, the helpless that stayed each night by a bed in the SICU unit, reading to her, praying that God would let me keep her, watching her lost in some twilight place. I would read to her and rub her feet and brush her hair then retreat to my un-comfy chair and try and get lost in an Episode of Big Bang Theory before sort of falling to sleep. That helpless couldn’t make sense of the world and wanted very badly for a sign that my wife was in there somewhere, I would have given anything to be the one on that bed instead of her, even though I know that she would be as messed up as I am if the tables were reversed.

Fast Forward a few days and J is awake and talking, well trying to talk and a new set of helpless rolls in, I have never been very good at lip reading or hand gestures, or non verbal cues. I would have to pull off both socks and have both kids lend me their fingers and toes to begin to count the number of times I stood in front of a church trying desperately to decipher something that J noticed or wanted to point out to me. This problem only exacerbated by the fact that I wasn’t very subtle in my remonstrations of trying to figure it out.

Now we are all the way awake, talking and moving a bit, eating this nectar stuff, yes thats right nectar, she hates it, they even thickened the water and I’m feeling helpless for an all new set of reasons.

I have always been a why person when it comes to the rules, just ask the work coordinators at Big Prairie a camp that no longer exists but still bear with me. I know the rules for J’s diet and there was a time that I would have just snuck her real food but I can’t. I can’t face giving her something that could put her back or potentially put her back where she was. She asks for candy, or a ritz pb sandwich and I want to give it to her because I don’t want her to lack for anything but I am afraid to because what if.

If it were just food issues I could handle it but I can’t help her in so many ways. I am at a loss for how to help her turn in the bed or how to help her do basic functions that we take for granted. I can’t help her sleep. She asks me to sing and I forget the names of the songs. I hold her hand or rub her head and cover her up and thats about it. I can sleep in the chair, something that she likes but when she has a need I have to ask a nurse and step out for however long it takes. Don’t get me wrong I have no problem asking a nurse but what happens when she gets out and there is no nurse and I have to help. Will I be able to? I think so but who knows what if I break her, what if I cook the wrong thing and she gets nauseated again and it all starts over?

This entire situation is a clear picture of the fact that humanity is a broken mess that can’t fix itself no matter how hard it tries. Humanity that must be willing to ask for help. God has systematically dismantled my pride and arrogance, I wonder what more he needed to do but apparently he wanted to remind me before the next phase of our life to ask for help when needed and to accept that help when offered.

Recap

1. J is now out of the SICU and on a new floor at Ruby Memorial hospital, 8 NE room 24


2. She is eating, well sort of, if she had her way she would be eating regular food but hey it’s a start.


3. Kidneys are still a concern


4. They are going to have a PT come in and start working on moving around a bit.


5. No real end to the hospital in site, at least not for this week.


6. No surgery at this time, they want to do it outpatient.


7. Girls are going to get to come in today, please pray for this it will be hard for all three of them and I am not sure how they will handle having to turn around and leave after the visit is over.

I so appreciate all of your prayers. These past weeks have given me a clear picture of the people that love us and care for us, and that Love J and care for her in spite of me. I am so glad that you are here and reading and encouraging all of us.

When you go a little loopy better keep your nurse well paid

Today’s update brought to you by.

Zombie’s R Us, Red Bull, and various gas station cappuccinos.

Last night was a great night... at first... J was awake, we talked we held hands it was nice. The problem is she was supposed to be sleeping. It’s so funny how the human mind works, how the lack of proper sleep can render normal tasks that it can usually handle with ease into a pile of useless sticks. Last night J wanted me to sing to her, I have led worship in churches have thousands and thousands of songs on my ipod, sing along to my favorite bands without missing a word, and wouldn’t you know last night I couldn’t remember whole songs. I could remember parts of them, the chorus or the first verse but when it came time to singing the whole song I just drew a blank. I spent over an hour looking up lyrics to songs that I know online only to find that I had forgotten the tune to some of the songs. How inadequate I feel to the task sometimes. I want to do what she needs me to do and be here to help her rest and sleep but I can’t even remember a few songs to sing.

We spent the night talking and me playing with her hair and humming and singing trying to calm her down. They won’t give her the same stuff that they were giving her to let her rest, because they want her to be solid in her breathing, so they gave her an antihistamine which can have the side effect of drowsiness, yes can have however with J it just made her wired and jittery. We had to tell them not to go with that one any more.

I told her she would be the life of the party with a little weed. She is kinda funny when she’s loopy and just sorta rambles about things and loses track of things. She has remained completely concrete and sure of one thing. HUNGER. All she can think about is food and recites on an hourly basis at least what she would like to eat.

Bullet Points

1. Tube is out she is talking and has said she has no sore throat.


2. Loopy from the drugs and fatigue


3. HUNGER this is in big type and a good thing she wants to eat.


4. Kidney’s still are a concern they may do dialysis again today


5. Surgery is out for the time being they want to get her back in for it at a later time

For those keeping up on my Facebook page the nurse from yesterday is history and we will not have to have her any more.

Please pray for the bullet points, also pray that I will be able to anticipate and be here when she needs me to be and that I won’t go a little loopy, well no more loopy than I already am.

Now is ze time on sprockets when we dance

To say that I have been frustrated with myself, would be the understatement of the century. J has been more alert and communicative for at least the last 24 hours. This is awesome it’s what we have all been praying for and I thank you. Remembering where we were this time last week and seeing where we are now is a huge awesome thing to realize. God is doing some serious work on her physically and for that I am very happy.

We spent most of yesterday and some of today trying to decipher sign language, gestures and facial expressions. We had a failed attempt at writing, and a failed attempt at typing I actually saved the pages file to show her when it’s all over along with the picture that she wanted me to take that I didn’t post.

As of now the tube is out. To say that I am happy would be the understatement of the world. It also should explain the Title. I feel like Dieter and I want to dance all over, is she better? No she isn’t all better but she is doing well, she is talking a bit, she has moved from a tube to a mask and she can actually tell me what she wants of a sort. In fact she already asked for contraband in the form of candy or soda. She wants a popsicle tomorrow.

Isn’t it funny how human nature is though. The first thought she had was for contraband, for something she shouldn’t have. This is how most of us are. It’s part of human nature. To want what we shouldn’t have to desire the thing that would be bad for us, to experience the forbidden. We want it as children, we want it as teenagers, we want it as young adults, we want it as grown ups, and I’m going to bet that when we hit the golden age of twilight we will want it as well. So what’s the answer? Whats the remedy? Some would say there doesn’t need to be one. Some would say self discipline, some would point to organized religion weather it be Christianity, or Islam or Judaism, or Buddhism. I am sure knowing my faith base and who I am that you wonder why I didn’t say I say Christianity. Bear with me before all of you that profess Christianity freak out. It’s not a religion or our own strength that we need. In fact religion of any sort will only serve to point out more vividly the things stuff we aren’t supposed to do, no what we need is someone stronger than we are, someone that we can go to that will provide us the support, encouragement and even forgiveness and acceptance when we do mess up. We need a place to go and we need someone to lead us there. Psalms says it like this.
1God, listen to me shout,
bend an ear to my prayer.
2When I’m far from anywhere,
down to my last gasp,
I call out, “Guide me
up High Rock Mountain!”
3You’ve always given me breathing room,
a place to get away from it all,
4A lifetime pass to your safe-house,
an open invitation as your guest

Welcome to my Nightmare

My entire life, but more specifically my married life, I have had the same nightmare. It always involves me losing the ones I love J and Amberly and Zoey specifically. This usually happens when they are driving to see family members and I am not with them, tragic drunk driver, or sliding off the road or any number of bad things. Sometimes I fear losing them in a house fire, sometimes a fall from some height. It’s a recurring theme, these bad dreams replaced my standard nightmare from years past, the one where I am crawling across a wide rope and feet from the end I watch as the strands that make up the rope snap one at a time plunging me to certain doom on the rocks below.

Fast forward in life and I realize that there are times that I have been so wrapped up in these nightmares that I have distanced myself from the ones I love. I have tried to protect them or to get them to be safe. I have tried to take over and take the place of God. I have been a man that is full of self righteousness and pride. I can handle it I can fix it. That’s the thing. Somewhere in the past two years the nightmare has changed a bit and this ordeal has just solidified that change. My nightmare now is that I will somehow not be the man that they need me to be, that I have worked so hard at exorcising my demons and keeping them safe that I will not take the chances and step up as the man of God that I am to be. That I will forget how to ask for help.

This whole ordeal has helped me realize that Help is okay That I can ask for help and accept it. God has helped me through these past two years to recognize that I am not and never have been the man nor do I need to be. This is even more pronounced as I try and understand the remonstrations of my wife.

So to the update.

1. The dialysis yesterday helped she is awake now much more than ever before.


2. Earlier this AM J began to answer questions with nods and gestures.


3. I asked her to squeeze my hand and because she was frustrated at my lack of understanding she bore down hard. It was the best feeling in the world.


4. Kidneys are producing more they are happier with that.


5. She still has a long way to go. The tube is going to come out at some point in the next two days and she will be in icu for at least 24 more hours. We then begin the long trek to finding out about the mass and when she can begin to have a more normal existence.


6. Hemoglobin is still not where it needs to be (look at me with the big medical terms)

I can not begin to describe the joy that I felt when she began to respond and when her eyes took on more cognizance. She still goes off into la la land once in a while and who can blame her she is still very sick and is tied to a bed. She has lost seven days of her life. The last thing she remembers is the Ambulance in Oakland.

Keep Praying because it’s obvious that the prayers are working.

Sweet like candy to my soul sweet you rock and sweet you roll

What happens when your best friend in the whole world is laying in a bed with tubes coming out of her? What does a person in that position do and think and feel. What do they sing? What do the pray for? What do they remember, what do they want to forget? I can tell you this they don’t want to forget one single second of life together.

17 years ago this wonderful beautiful woman crashed into me. I have never been right since. She has altered my life completely for the better. She has me tied up and twisted thats for sure, I can’t imagine life without her and I am finally getting to the point where I don’t think I will have too.

I want to let you all know that today was a good day. Last night was long and I didn’t sleep much but it was okay, J has started to wake up, she is responding to things a little bit more each day.

I am quite tired but thats okay. I will be tired if it means helping her get to a better place. Thanks for all your prayers, We still need them.

Quick Update

1. Last night J really started to get agitated and seemed to be waking up a bit more.


2. Dialysis today which is never a nice thing to walk into but I am glad they did it, see 3


3. J is starting to respond more, in fact today I told her to open her eyes and she did, we asked her a few questions and she nodded in response, this is HUGE, she still can’t squeeze my hands and such but she can respond. We may get to see the tube come out Monday.


4. Kidney’s are producing more this is a good thing, however the numbers are still high and have not really started to drop yet. KIDNEYS are an imperative we need these numbers to be better.


5. Blood count is low they did give some blood because of that we need 10 it’s at about 8 maybe.

Got to see my parents and the kids today. I love my family more than anything and getting to hold the girls was awesome. I so appreciate the way family has come around and helped me through this and friends past and present have been here for us. I love you all past and present, even the ones that I don’t understand, even the ones that I have been upset with, what a perspective this whole thing gives on that.

Need to send a few thanks out today.

Jr. Thanks you know why
Joe 3 words, digits, NLT, CHINESE
Andi Thanks for the room help for my rents.

More thanks to come and if you’re reading and want to remind me to tell you this one dream.

Everybody Hurts

When the day is long and the night, the night is yours alone, When you're sure you've had enough of this life, well hang on Don't let yourself go, 'cause everybody cries and everybody hurts sometimes Sometimes everything is wrong. Now it's time to sing along When your day is night alone, (hold on, hold on) If you feel like letting go, (hold on) When you think you've had too much of this life, well hang on 'Cause everybody hurts. Take comfort in your friends Everybody hurts. Don't throw your hand. Oh, no. Don't throw your hand If you feel like you're alone, no, no, no, you are not alone If you're on your own in this life, the days and nights are long, When you think you've had too much of this life to hang on Well, everybody hurts sometimes, Everybody cries. And everybody hurts sometimes And everybody hurts sometimes. So, hold on, hold on Hold on, hold on, hold on, hold on, hold on, hold on Everybody hurts. You are not alone I know I risk getting nailed with copyright infringement or something but this song says so much better what my days and nights feel like. Sometimes everything is wrong, Take comfort in your friends these are things that I have been trying to do, as well as talking to J and to God. Today was one of those days that don’t see much progress the way i want but that do show she is getting things together. Here goes the update The sedative is off completely, however J is not waking up. This is a bad thing she needs to wake up if we want to get the tube out. She needed more blood as her hemoglobin level went down they gave her the blood but now we have to wait for the labs to see what that did and how it is. She is getting restless but not waking up. The last one is the hardest. I want to make it all better for her and I’m not able too. I want to take the pain and the hurt and the discomfort and have her up and running around and working on things. When she starts to thrash around and even opens her eyes and rolls them in my direction I feel so helpless especially seeing what I can only register as fear or confusion. I am a man who is trying to be what he needs to be for the woman he loves, but this is one of those times that I can’t beat back the bad guy or put my coat around her shoulders as we walk along the shore of a cold lake. It won’t work I have to just be here adn pray and cry and talk to her and hold her hand. Again I find myself saying help my doubts.