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.
Thursday, January 28, 2010
Wednesday, January 27, 2010
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
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
- J is now out of the SICU and on a new floor at Ruby Memorial hospital, 8 NE room 24
- She is eating, well sort of, if she had her way she would be eating regular food but hey it’s a start.
- Kidneys are still a concern
- They are going to have a PT come in and start working on moving around a bit.
- No real end to the hospital in site, at least not for this week.
- No surgery at this time, they want to do it outpatient.
- 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.
Tuesday, January 26, 2010
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
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.
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
- Tube is out she is talking and has said she has no sore throat.
- Loopy from the drugs and fatigue
- HUNGER this is in big type and a good thing she wants to eat.
- Kidney’s still are a concern they may do dialysis again today
- Surgery is out for the time being they want to get her back in for it at a later time
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.
Monday, January 25, 2010
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
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
Sunday, January 24, 2010
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.
Keep Praying because it’s obvious that the prayers are working.
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.
- The dialysis yesterday helped she is awake now much more than ever before.
- Earlier this AM J began to answer questions with nods and gestures.
- 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.
- Kidneys are producing more they are happier with that.
- 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.
- Hemoglobin is still not where it needs to be (look at me with the big medical terms)
Keep Praying because it’s obvious that the prayers are working.
Saturday, January 23, 2010
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
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.
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
- Last night J really started to get agitated and seemed to be waking up a bit more.
- Dialysis today which is never a nice thing to walk into but I am glad they did it, see 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.
- 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.
- Blood count is low they did give some blood because of that we need 10 it’s at about 8 maybe.
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.
Friday, January 22, 2010
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
Again I find myself saying help my doubts. |
Warm Blankets
I am sure that many of you that are reading have had loved ones in the hospital at one point or another, I am also sure that some people have been in my shoes. I really only want one thing and I am sure that everyone reading this knows what that is. I want them to fix her, and they are albeit slowly. Docs are coming in today of course, and they are going to see if it’s possible to pull the breathing tube at some point, which will be great, not sure if they have to to another round of dialysis yet that may be a factor. I will give an update later in the day when we know more as far as her condition is. I thought I would update how our night went instead.
When I went in last night I talked to her nurse that was here for the majority of the day, what a great nurse, answered questions and asked about our life a little bit. She got on at 11 and was here till a little bit after 11 so she was here when I made my trek back to my bed, a blue reclining chair that i have against the front wall of J’s icu room.
Our routine of an evening is a simple one but it is important to me. I ask a few questions when I get into the room, hold j’s hand and kiss her on the cheek tell her I love her and then talk about you all, and about the girls, and about what we are going to do this summer. Then I pull the uncomfortable chair right next to her bed and read to her from the Bible. We are reading the psalms right now I like that a bit better than some of the other stories and chapters, somehow I don’t think she needs to hear levitical law or the genealogies at this point, still we may get there who knows. After I read the Bible to her we pray for a bit, and then I read from a story book, right now I am reading to her from a Gregory McGuire book the third one in his Oz series, it’s about the Lion I am wondering if he is going to also talk about the tin man in a book and the scare crow in another, He steers clear of Dorothy except for passing references, which I find refreshing.
After that I talk to her a bit more and hold her hand, put lotion on her feet and cover her up. I am thinking of getting some nail polish for her so she can have pretty toes and doing that if she is still knocked out today, did I just say that.
After that I just sit in my chair and watch her or type on here or watch hulu or big bang theory or whatever. It’s a nice distraction. Last night had some pretty neat additions. The staff that was back there was really great they all have been I appreciate Jim from when we first got here, lasts night staff just was very welcoming like he was but the whole staff was that way. One of them had brought all sorts of stuff to make hot chocolate and not just the swiss miss mind you but the gourmet stuff with marshmallows, whipped creme, and chocolate syrup. When they brought me my cup it was hot and looked like something that would have come from St. ARbukcs. I have missed my weekly pilgrimage to the shrine of the patron saint of coffee. (thanks Keith for the reference)
The best part of the night though is when they bring me blankets, I so want one of those warmers nice hot blanket out of the oven. What a feeling to drift off to sleep with a warm blanket.
When I went in last night I talked to her nurse that was here for the majority of the day, what a great nurse, answered questions and asked about our life a little bit. She got on at 11 and was here till a little bit after 11 so she was here when I made my trek back to my bed, a blue reclining chair that i have against the front wall of J’s icu room.
Our routine of an evening is a simple one but it is important to me. I ask a few questions when I get into the room, hold j’s hand and kiss her on the cheek tell her I love her and then talk about you all, and about the girls, and about what we are going to do this summer. Then I pull the uncomfortable chair right next to her bed and read to her from the Bible. We are reading the psalms right now I like that a bit better than some of the other stories and chapters, somehow I don’t think she needs to hear levitical law or the genealogies at this point, still we may get there who knows. After I read the Bible to her we pray for a bit, and then I read from a story book, right now I am reading to her from a Gregory McGuire book the third one in his Oz series, it’s about the Lion I am wondering if he is going to also talk about the tin man in a book and the scare crow in another, He steers clear of Dorothy except for passing references, which I find refreshing.
After that I talk to her a bit more and hold her hand, put lotion on her feet and cover her up. I am thinking of getting some nail polish for her so she can have pretty toes and doing that if she is still knocked out today, did I just say that.
After that I just sit in my chair and watch her or type on here or watch hulu or big bang theory or whatever. It’s a nice distraction. Last night had some pretty neat additions. The staff that was back there was really great they all have been I appreciate Jim from when we first got here, lasts night staff just was very welcoming like he was but the whole staff was that way. One of them had brought all sorts of stuff to make hot chocolate and not just the swiss miss mind you but the gourmet stuff with marshmallows, whipped creme, and chocolate syrup. When they brought me my cup it was hot and looked like something that would have come from St. ARbukcs. I have missed my weekly pilgrimage to the shrine of the patron saint of coffee. (thanks Keith for the reference)
The best part of the night though is when they bring me blankets, I so want one of those warmers nice hot blanket out of the oven. What a feeling to drift off to sleep with a warm blanket.
Thursday, January 21, 2010
Tug Of War
Field day’s the world over have this time honored tradition, and when I was planning camps in the NWD we usually had some form of it ever a huge mud pit or something similarly muddy. Whats it got to do with today, well we are in a tug of war.
Last night things were good. I am sure you read the post and I’m sorry for being behind today, didn’t sleep too well last night.
They were going to take the tube out today, however because J’s kidneys are so bad and the cretin number is so high they are now going to do the dialysis that they have been holding off on for the past few days.
Oxygen level dropped and they had to turn it back up, so for the foreseeable future the tube is in, they are going to try and ween her off of the breathing tube and such but the dialysis is a set back. Her kidneys have to start working and they are hoping that if they clean things out with the dialysis and continue to pump in the fluids they will jump start i guess is the best way to say it.
They are defiantly going to do a biopsy at some point of the mass on her adrenal gland and they definitely want to take that out, we just have to get her better and we have to get her kidneys okay before they will do that.
23Jesus said, “If? There are no ‘ifs’ among believers. Anything can happen.”
24No sooner were the words out of his mouth than the father cried, “Then I believe. Help me with my doubts!”
I am trying to not have if’s but it’s getting harder and harder to do. I fell like we hear some good news and I get my hopes up and I get your hopes up and then there are things that pull those hopes down. I am praying this help my doubts but I’m also asking all of you to pray, I know it’s rather silly for me to think I have to do that, I know you are but today when I went to grab my shower and just walk around I was banging my fists on the door of Heaven again. I am trying so hard to keep the positive side of things as others want to keep the negative or can’t see much but the negative but when I’m alone and walking around I see the looming specter of a life without the most important person in my world. I see having to explain to my girls why mommy isn’t coming home. I see all of these things and I yell at God and I scream inside and feel so helpless. I can’t do anything but pray and cry and pray and cry and entertain. I think thats whats so hard in all of this, I know that people need to be able to come and feel that they are a support and feel that they are helping but I wonder if they recognize that it’s a strain to have to entrain them, to try and not hurt their feelings, to try and let them go see her and not tell them to get away go home and read the blog and get the occasional call. I hate having to play the host in a hospital waiting room while my wife lays on a respirator in a room in an induced coma.
So again please pray, fill in the gaps of my prayer as they are big and looming in my heart and in my mind.
Recap
Last night things were good. I am sure you read the post and I’m sorry for being behind today, didn’t sleep too well last night.
They were going to take the tube out today, however because J’s kidneys are so bad and the cretin number is so high they are now going to do the dialysis that they have been holding off on for the past few days.
Oxygen level dropped and they had to turn it back up, so for the foreseeable future the tube is in, they are going to try and ween her off of the breathing tube and such but the dialysis is a set back. Her kidneys have to start working and they are hoping that if they clean things out with the dialysis and continue to pump in the fluids they will jump start i guess is the best way to say it.
They are defiantly going to do a biopsy at some point of the mass on her adrenal gland and they definitely want to take that out, we just have to get her better and we have to get her kidneys okay before they will do that.
23Jesus said, “If? There are no ‘ifs’ among believers. Anything can happen.”
24No sooner were the words out of his mouth than the father cried, “Then I believe. Help me with my doubts!”
I am trying to not have if’s but it’s getting harder and harder to do. I fell like we hear some good news and I get my hopes up and I get your hopes up and then there are things that pull those hopes down. I am praying this help my doubts but I’m also asking all of you to pray, I know it’s rather silly for me to think I have to do that, I know you are but today when I went to grab my shower and just walk around I was banging my fists on the door of Heaven again. I am trying so hard to keep the positive side of things as others want to keep the negative or can’t see much but the negative but when I’m alone and walking around I see the looming specter of a life without the most important person in my world. I see having to explain to my girls why mommy isn’t coming home. I see all of these things and I yell at God and I scream inside and feel so helpless. I can’t do anything but pray and cry and pray and cry and entertain. I think thats whats so hard in all of this, I know that people need to be able to come and feel that they are a support and feel that they are helping but I wonder if they recognize that it’s a strain to have to entrain them, to try and not hurt their feelings, to try and let them go see her and not tell them to get away go home and read the blog and get the occasional call. I hate having to play the host in a hospital waiting room while my wife lays on a respirator in a room in an induced coma.
So again please pray, fill in the gaps of my prayer as they are big and looming in my heart and in my mind.
Recap
- Last night she was out breathing the respirator (good thing)
- Oxygen level dropped (not good thing)
- Kidneys are bad so they are doing dialysis (bad thing)
- They want to biopsy the mass on her adrenal gland (scary thing)
- My normally engaging personality that is full of good will is starting to wear thin (BAD thing)
Wednesday, January 20, 2010
Finally some real information.
Dr just said when I get to her home. I have never wanted to hear any words more than those words in my life. We are still far from things being great. Kidney Function is still abysmal but she is producing urine now just not as much as they want.
Vital signs are good and strong and that is a good thing. There is no bowel obstruction after all at least they dont think there is what they do think is that the mass is pushing on things and that may be pushing on the bowel, which is what is causing the issue.
Now to what happened.
They believe that when J was throwing up on Sunday she aspirated some of the vomit into her lungs, the thing is there stuff bugs whatever that are present in your guts or whatever are not supposed to be in other parts of your body. She was septic. and her lungs took the brunt of it because thats where the bugs were, they are pulling a pretty good amount of fluid off of her lungs.
So whats it mean. Well for the first time a Dr. told me that they could fix her even though he didn’t say we can fix her he said when I get her home, which was not something that he was saying yesterday or even 5 hours ago today.
So here is the Bullet Points
Thanks for all the prayers, please keep praying as until she is awake and is not on the ventilator she is still considered critical, however she is actually stable now.
Vital signs are good and strong and that is a good thing. There is no bowel obstruction after all at least they dont think there is what they do think is that the mass is pushing on things and that may be pushing on the bowel, which is what is causing the issue.
Now to what happened.
They believe that when J was throwing up on Sunday she aspirated some of the vomit into her lungs, the thing is there stuff bugs whatever that are present in your guts or whatever are not supposed to be in other parts of your body. She was septic. and her lungs took the brunt of it because thats where the bugs were, they are pulling a pretty good amount of fluid off of her lungs.
So whats it mean. Well for the first time a Dr. told me that they could fix her even though he didn’t say we can fix her he said when I get her home, which was not something that he was saying yesterday or even 5 hours ago today.
So here is the Bullet Points
- She is doing much better.
- Want to get her off the respirator in the next 2 to 3 days.
- Kidneys need to be better and start to function properly this is the BIG BIG BIG need. this also it seems is the place where all the things that have been gained could be lost.
- The Mass does have to be investigated but not until she gets up to a regular room.
Thanks for all the prayers, please keep praying as until she is awake and is not on the ventilator she is still considered critical, however she is actually stable now.
A wall of Funk
When you are in a PUBLIC waiting room, even if you are sleeping in that waiting room, and you have been in the Hospital with a loved one please leave your shoes on. When you take them off you make the entire waiting room that you have to share with other people like feet. Thankfully they let me sleep on a recliner in J’s room.
Now on to the update.
They are backing down on the sedation, which is a good thing, last night I kissed her cheek and told her I loved her and she moved her head. FIrst time she has responded to me she also opened her eyes when the respitory therapist did some suctioning. They tell me she won’t remember these things but that was a huge deal for me.
J is maintaining her vital signs on her own which is a good thing. They told me last night that they don’t want to give me false hope, they also said that they may have to give her stuff back if the levels change and they want me to know they can change at any time.
There is still some confusion as to this mass on her adrenal gland. I know that the MICU dr wants it removed, at first they were saying get her okay and schedule it outpatient, now they are saying biopsy and get it out of there now so we are in a holding patter, We are in a holding pattern on so many things.
FInally a top Dr from DC has been checkin on her thanks to the team of people at her school. We are so appreciative for all the care and support coming from that direction.
I am going to get out of the hospital for a bit and get a much needed shower today. I am sure that everyone will thank me the sponge baths are just not cutting it.
So for those that like to have a quick recap
Now on to the update.
They are backing down on the sedation, which is a good thing, last night I kissed her cheek and told her I loved her and she moved her head. FIrst time she has responded to me she also opened her eyes when the respitory therapist did some suctioning. They tell me she won’t remember these things but that was a huge deal for me.
J is maintaining her vital signs on her own which is a good thing. They told me last night that they don’t want to give me false hope, they also said that they may have to give her stuff back if the levels change and they want me to know they can change at any time.
There is still some confusion as to this mass on her adrenal gland. I know that the MICU dr wants it removed, at first they were saying get her okay and schedule it outpatient, now they are saying biopsy and get it out of there now so we are in a holding patter, We are in a holding pattern on so many things.
FInally a top Dr from DC has been checkin on her thanks to the team of people at her school. We are so appreciative for all the care and support coming from that direction.
I am going to get out of the hospital for a bit and get a much needed shower today. I am sure that everyone will thank me the sponge baths are just not cutting it.
So for those that like to have a quick recap
- VItals Good
- Responsiveness better
- Situation still very critical
- Aaron gets a shower
Tuesday, January 19, 2010
Too many cooks
I never really understood that, one of the things that I love is when J and I work in the kitchen together. When we make candy or when we are cooking, when we are in the same kitchen area it’s just really awesome, I know it drives her nuts sometimes because I can tend to be in the way, even though I don’t mean to be. She and I work well together on so many things. So I never really thought that too many cooks thing was as accurate as they say. I would say though that there are Too many Dr’s.
Talk about conflicting reports. Here is a sample
Renal Team
renal failure heart is also in failure, we may have to do dialysis
Heart Team
there is no heart attack, her heart looks strong
Surgical team
she is very sick, heart is compromised, there is a heart attack
Bood Dude (yes I know thats not politically correct but deal with it)
internal bleeding, we need to get that under control can’t do surgery till we fix the bleeding
MICU team (general icu dr and team)
She is very sick but responding to treatment, she is young and that is in her favor. It’s not heart attack as much as heart trauma, Still need her to be sedated.
Lung Team
Lungs are compromised with pneumonia tons of anti biotics
I ask questions and then get conflicting answers. So it’s quite confusing. One doctor did tell me last night that they are not telling me the answer I want to hear because they can’t promise that it would be better he said for them to tell me that she is going to pass and have her get better than it would be for them to tell me everyithng will be fine and then she passes.
Talked today to the MICU team and they did say she is better than she was when she first got here, still the swelling really bothers me and I just love her and need her to be okay. I am reading to her now and waiting to go back in again.
Thank you all for your prayers, I appreciate all of you and will continue to keep you updated as I find things out.
Talk about conflicting reports. Here is a sample
Renal Team
renal failure heart is also in failure, we may have to do dialysis
Heart Team
there is no heart attack, her heart looks strong
Surgical team
she is very sick, heart is compromised, there is a heart attack
Bood Dude (yes I know thats not politically correct but deal with it)
internal bleeding, we need to get that under control can’t do surgery till we fix the bleeding
MICU team (general icu dr and team)
She is very sick but responding to treatment, she is young and that is in her favor. It’s not heart attack as much as heart trauma, Still need her to be sedated.
Lung Team
Lungs are compromised with pneumonia tons of anti biotics
I ask questions and then get conflicting answers. So it’s quite confusing. One doctor did tell me last night that they are not telling me the answer I want to hear because they can’t promise that it would be better he said for them to tell me that she is going to pass and have her get better than it would be for them to tell me everyithng will be fine and then she passes.
Talked today to the MICU team and they did say she is better than she was when she first got here, still the swelling really bothers me and I just love her and need her to be okay. I am reading to her now and waiting to go back in again.
Thank you all for your prayers, I appreciate all of you and will continue to keep you updated as I find things out.
six o clock in the morning
Last night they brought me a reclining chair and I was able to stay in the icu room with J. It was so important that I get to do that. I am so grateful for the family that surrounds me during the day, even if there are those times that I want some time with just us, thats what makes the nights so important. I am able to be with her and that is good. I can talk to her and pray for her and read to her.
Blood level is up but still not where it’s supposed to be. I am also concerned because she is starting to swell up a little bit. This really scares me, they tell me that she is swelling up because of all the “product” that they are giving her. They also told me that it is going to get worse before it gets better because she can’t walk around.
Why do things have to get worse before they get better? Why do things have to get worse at all?
I want to hear her voice, I want to see her smile, I want to hold her hand and have her hold mine back. I want to drive her to work today and pick her up from work tonight. I just want my family back as a whole.
More to come as the day wears on when I talk to the Dr’s i’ll let you know
Blood level is up but still not where it’s supposed to be. I am also concerned because she is starting to swell up a little bit. This really scares me, they tell me that she is swelling up because of all the “product” that they are giving her. They also told me that it is going to get worse before it gets better because she can’t walk around.
Why do things have to get worse before they get better? Why do things have to get worse at all?
I want to hear her voice, I want to see her smile, I want to hold her hand and have her hold mine back. I want to drive her to work today and pick her up from work tonight. I just want my family back as a whole.
More to come as the day wears on when I talk to the Dr’s i’ll let you know
Monday, January 18, 2010
Lets Re-Cap
Yesterday J was at church, and after going to the restroom was not returning, her mom went and found J throwing up, she said she wanted to go home, when they returned home, Jean could not get a good blood pressure, J was cold and clammy. She called 911 and they took J to the hospital in Oakland.
They had a hard time getting J stabilized. She has fluid on her lungs and her heart rate was not what it needed to be. Still no idea what it is they put in a chest tube and have her hooked to a ventilator. When they finally got her stabilized they sent her to Ruby Memorial in West Virginia.
I received the call after returning from work and threw some things into a bag and drove to the Hospital. Kidney’s are not good, heart is not good, lungs are full of fluid, gall bladder is 2x’s its normal size and there is a mass on her kidney also there are possible issues with either her spleen or her adrenal gland not sure which one it is 7 cm instead of what it is supposed to be.
The kidney dr’s thought they needed to put her on dialysis due to elevated potassium levels. There is a ptl in that they did the blood work and found out that they did not need to do the dialysis after all. However she is still not out of the woods, we are waiting and praying. She could be sustaining a heart attack she is in with the heart dr’s now.
The girls are staying with family so pray for them. Pray for all of us. I want J to be back and to be normal so pray for her as well. We are waiting for a surgical consult and for the heart dr’s. They are not telling me that they will fix her they are just telling me that they are doing all that they can and that they are doing their best. They also keep saying she is a very sick girl.
Thanks for your prayers
They had a hard time getting J stabilized. She has fluid on her lungs and her heart rate was not what it needed to be. Still no idea what it is they put in a chest tube and have her hooked to a ventilator. When they finally got her stabilized they sent her to Ruby Memorial in West Virginia.
I received the call after returning from work and threw some things into a bag and drove to the Hospital. Kidney’s are not good, heart is not good, lungs are full of fluid, gall bladder is 2x’s its normal size and there is a mass on her kidney also there are possible issues with either her spleen or her adrenal gland not sure which one it is 7 cm instead of what it is supposed to be.
The kidney dr’s thought they needed to put her on dialysis due to elevated potassium levels. There is a ptl in that they did the blood work and found out that they did not need to do the dialysis after all. However she is still not out of the woods, we are waiting and praying. She could be sustaining a heart attack she is in with the heart dr’s now.
The girls are staying with family so pray for them. Pray for all of us. I want J to be back and to be normal so pray for her as well. We are waiting for a surgical consult and for the heart dr’s. They are not telling me that they will fix her they are just telling me that they are doing all that they can and that they are doing their best. They also keep saying she is a very sick girl.
Thanks for your prayers
Do you dare...
I realize that I have already posted today, so much is happening in our life right now and I just don’t know what I will do if things don’t change and if I lose her. We get small amounts of good news and then we get the bad news that goes with it as well.
I realize that I am a Pastor though, even if I don’t have a church proper, even if I’m not doing it full time it’s what I am. This realization came as I was sitting in this waiting room. I am not the one that sits I am the one that comforts, and prays for and listens to. I’m the one that helps the Family and now I’m the one that is sitting in the waiting room praying that God will heal my wife, even as I shake my fist at God and ask him why and what’s more.
I know all the answers I have taught them, but those answers don’t matter, all of those answers are true but can be so cliche’. Do I believe in God? Yes, Do I trust him? Yes and no. Am I angry at Him? Yes. My wife is the most spectacualr woman around, she is the most important person in the world, strong, loving, giving and there is not a thing I can do I can’t no matter how hard I try make myself feel anyting but loss and grief and anger. If you are a praying person please pray for J. If you aren’t then know that I understand why you dont pray, I understand what it’s like to feel like your banging your fists on the door of heaven and hear the hollow sound of emptiness.
I am banging my fists right now. I have been for a long time and this whole sad situation makes that banging even more pronounced.
God is listening though. It’s not as hollow as it used to be. It’s populated, there are sounds of life and laughter and music and sorrow and pain. I am a man of God, I will always be and there is no way I can run away from that, at the same time I believe that My God is big enough for me to yell at him a bit and to tell him he’s wrong and to cry on his shoulder and to put him in a box and to blame him. He is big enough to fix J right now where she is, and he is big enough to tell me and her that it’s time for her to leave. If he does tell her to leave though I know that He and I will have a long road ahead, I know that I will be angry and bitter, I know that I will not want to follow not want to serve. I know I will run as far from him as I can if he takes her away. I know this, and so does he. but along with all the things that I know all those things that are and all the running and anger and screaming and blaming that I will do of my God I also know that he will not leave me, he will not abandon me, he will be there when I’m ready to stop what i’m doing and turn to him and I know that when I call on him he will answer me He makes me that promise. He will not stop being God even when I stop believing in HIm, and he will not push me away when I realize that He is doing things in His time in HIs way and that He really does have the best in mind. He will be there with arms wide open when I stop running and he will act like I’ve always been right where he is right by his side, the cool thing is for him it won’t be an act, for him it will be a reality. He will not leave me He will not abandon me He will be waiting to put his arms around me and accept me again as is.
I realize that I am a Pastor though, even if I don’t have a church proper, even if I’m not doing it full time it’s what I am. This realization came as I was sitting in this waiting room. I am not the one that sits I am the one that comforts, and prays for and listens to. I’m the one that helps the Family and now I’m the one that is sitting in the waiting room praying that God will heal my wife, even as I shake my fist at God and ask him why and what’s more.
I know all the answers I have taught them, but those answers don’t matter, all of those answers are true but can be so cliche’. Do I believe in God? Yes, Do I trust him? Yes and no. Am I angry at Him? Yes. My wife is the most spectacualr woman around, she is the most important person in the world, strong, loving, giving and there is not a thing I can do I can’t no matter how hard I try make myself feel anyting but loss and grief and anger. If you are a praying person please pray for J. If you aren’t then know that I understand why you dont pray, I understand what it’s like to feel like your banging your fists on the door of heaven and hear the hollow sound of emptiness.
I am banging my fists right now. I have been for a long time and this whole sad situation makes that banging even more pronounced.
God is listening though. It’s not as hollow as it used to be. It’s populated, there are sounds of life and laughter and music and sorrow and pain. I am a man of God, I will always be and there is no way I can run away from that, at the same time I believe that My God is big enough for me to yell at him a bit and to tell him he’s wrong and to cry on his shoulder and to put him in a box and to blame him. He is big enough to fix J right now where she is, and he is big enough to tell me and her that it’s time for her to leave. If he does tell her to leave though I know that He and I will have a long road ahead, I know that I will be angry and bitter, I know that I will not want to follow not want to serve. I know I will run as far from him as I can if he takes her away. I know this, and so does he. but along with all the things that I know all those things that are and all the running and anger and screaming and blaming that I will do of my God I also know that he will not leave me, he will not abandon me, he will be there when I’m ready to stop what i’m doing and turn to him and I know that when I call on him he will answer me He makes me that promise. He will not stop being God even when I stop believing in HIm, and he will not push me away when I realize that He is doing things in His time in HIs way and that He really does have the best in mind. He will be there with arms wide open when I stop running and he will act like I’ve always been right where he is right by his side, the cool thing is for him it won’t be an act, for him it will be a reality. He will not leave me He will not abandon me He will be waiting to put his arms around me and accept me again as is.
Why?
I am sitting in a waiting room in Morgantown West Virginia waiting for doctors and surgeons to tell me what is happening. None of them will tell me the answer that I want to hear. I keep saying you have to fix her, instead of saying we will, or we are they keep saying they are doing all that they can. I don’t want them to just do all that they can I want them to fix my wife.
We are waiting, thats all we can do.
We are waiting, thats all we can do.
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Until I Wasn't
I've been writing some different things lately. This one has been kicking around in my head the last few days so I decided to go ahead ...
