A couple of years ago, a song hit the christian radio airwaves, "Held" and it took the airwaves by storms. It rang true for so many people. Natalie Grant had a friend who lost their 2 month old son and as she saw their grief, she realized that we, as Christians did not really know how to deal with grief. Some of us expected to be given a pass on grief and pain simply because we have believed in God.
Many get through their trials, and become much stronger and are able to say ...this, is what survival is. This, is what it is when God see's you through a battle.
I think, the phrase in the song that struck me the most when I first heard it, was the "we're asking, why did this happen to us, who told us we'd be rescued"
The mentality of there will be perfection after coming to the cross ... no pain after coming to Christ, that He will heal our pain (instantly is the given implication) and that even if the healing is not instant, there will be no more grief experienced to add on ... and the reality is ... God never promised us that. He promised, to hold us, to see us through this harsh world that has it's unfair grief ..and to get us through the valley of the shadow of death and to bear us up, when the battle wages on longer than we expected. He never promised to take us out, only to be with us.
In Isaiah it talks about the fire and the flood ... God promised that we would walk through the flood and it would not over take us, and we would walk through the fire and not get burned ... He however, did not promise that we would not get hot, and that we would not get wet.
When my friends baby died 2 months ago yesterday, I heard this song right as I got into my car after the funeral. As I was reminded by God, that He was with me in my grief, and my pain, and my friends deep deep grief ... and in that special timing ... 2 years is too little, but that this is what it means to be held ... I knew that inspite of my broken heart, God knew. I knew he was there.
Yesterday, I was thinking about what the song meant to me in my current situation. So, I thought I would post the words ...and below, I will post what it means, for Don and I ... and where we are now .....
Held
By Natalie Grant
Two months is too little.
They let him go.
They had no sudden healing.
To think that providence would Take a child from his mother while she prays
Is appalling.
Who told us we'd be rescued?
What has changed and why should we be saved from nightmares?
We're asking why this happens To us who have died to live?
It's unfair.
Chorus:
This is what it means to be held.
How it feels when the sacred is torn from your life And you survive.
This is what it is to be loved.
And to know that the promise was When everything fell we'd be held.
This hand is bitterness.
We want to taste it, let the hatred know our sorrow.
The wise hands opens slowly to lilies of the valley and tomorrow.
(Chorus)
This is what it means to be held.
How it feels when the sacred is torn from your life And you survive.
This is what it is to be loved.
And to know that the promise was When everything fell we'd be held.
Bridge:
If hope is born of suffering.
If this is only the beginning. Can we not wait for one hour watching for our Savior?
(Chorus) This is what it means to be held. How it feels when the sacred is torn from your life And you survive. This is what it is to be loved. And to know that the promise was When everything fell we'd be held.
Don and I had known for years that eventually his body would decide that it had had enough. That the twisting of the scoliosis would decide to tear apart his body. We'd done the smart thing, and talked, and planned ...and we did the smart thing and acted like it was never going to happen. You simply cannot live as if it's going to be over your head. The depression it would cause would be unbearable.
For the last 18 months, Don and I have had a wonderful marriage. A gift ... a second chance ... and now, everything's changed and we don't know where we stand, or where we are going. As we wait to find out what our new version of normal is going to be ... we sit, and we are Held.
What was sacred ...freedom, independence, breathing ... dressing ... Don getting up and going out for a cup of coffee on his own ...showering ... without someone driving him ... or helping him to get there ...walking ... mowing the lawn ...
Living a life .. in conjunction with a family, but independent of the family ... helping the family, supporting the family ... supportive of the family ... working together to help the family be a family unit, but not dependent on the family ...
That was sacred ... and now ... he will be coming home .. with medical equipment
A bipap machine
a walker
a shower chair
a grabber
a wheelchair
oxygen
an air mattress
The thing we don't know .. the air mattress ..what does that mean? Will that mean he'll need his own bed ... and that ... is sacred. What does that mean? Will it fit OUR bed ... or will it be required to have a hospital bed?
Everyone knows that the marriage bed is sacred ... will we even be sharing a bed? This is what it means to be held, when the sacred is torn from your life ..and you survive ... this is what it means when the sacred is torn from your life and you survive ... this is what it means ...
He will adjust to the walker, he will get used to needing a wheelchair some of the time, oxygen sometimes ..and the bipap at night. He will adjust, we will adjust ...
and we will be held.
He is here .. and we just have to know that we are in the palm of God.
What we once took for granted, is no longer our normal, and God knows that, and he will extend to us the grace and mercy that we need ...so that we know, that we've been held ...
A couple of weeks after he got out of ICU, I was reflecting back on that time, and scripture ..and I realized that I had indeed walked through the valley of the shadow of death ... and I realized that in that time ... I was filled with love, and concern for my husband ... and I was NOT ready to loose my husband ... but there was a calmness, and a lack of chaos for me ... and I was not filled with fear! I had truely walked through the Valley of the Shadow of death, and not feared the evil ... Because God was with me.
That was what it meant to be held ... and to survive.
It's been over 5 weeks ... since he went into the hospital ... it will probably be the end of next week before he comes home ... and with a whole new lifestyle of equipment ...This is what it means to be held. How it feels when the sacred is torn from your life And you survive. This is what it is to be loved. And to know that the promise was When everything fell we'd be held.
Dr. Suess
"And will you succeed? Yes indeed! Yes indeed! Ninety Eight and Three Quarters guarenteed!"
Friday, June 29, 2007
Monday, June 25, 2007
not much today
Nothing much to update today,
I tried to wake up this morning and my body would just not wake up. I was soo drowsy, I just kept falling asleep.
Don called to see when I was coming in, and I told him I couldn't seem to wake up, and he and I agreed I would just sleep till I was slept out.
When I finally woke up, I realized that I was sooo hot. I thought I'd turned the a/c off, or the a/c wasn't working. So I went to check the a/c.
Nope, a/c is just fine ...and blowing.
I swallowed ...and realized ...whoops, the throat hurts.
So I took my temperature ...101.2. Crud.
I called the doctor, they called back. Under normal circumstances, they'd make me come in, but given that they'd just stuck me on prednsione dose pack for the lupus/MG flare, and that I've been exposed for the last month to who knows what around the hospital ... and I'm on Cellcept (immunosuppressant) even if it IS a virus, it could go into a secondary bacterial, and Don doesn't need that exposure. So, stay home till I'm fever free for 24 hours ... and take the antibiotics.
*whew* the last thing I wanted was to drag myself to the doctor's right now. 99 times out of 100, I would cringe out of a doctor giving antibiotics without an exam or proof of bacterial infection. This, is the 1 time out of 100 that I was really hoping they'd just go around the standard rule.
Ya know, I *ALMOST* on gut instinct asked for a script of antibiotics when she started me on the high dose prednisone last week. I've never started on high doses of prednisone without getting sick. I thought about it, and said I promise to let you know if I use them. And thought "nah, that's absurd"
On the Don front.
Sigh. He called last night, they'd come in to weigh him ... he's down to 90.4 pounds. He was 98 lbs when he checked in. They have him on a high calorie, high protien diet and he is eating. I guess the physical exercise is pushing him and burning more calories in trying to build his endurance to gain back what he's lost?
The pulmonologist is trying to give his nose a break and seeing what happens when he's off oxygen when he's just laying down without activity. The nurses, the Respiratory therapists and PT's are not impressed. He was at 98 to 100 on oxygen, and just laying down doing nothing dropped to 94.
However, he's had bloody noses for the last 3 or 4 days. So, at least for a couple of days, as long as it stays at 94 ... we're going to give his nose a chance to heal.
So, today, I'm home, much to my husband's dismay ... :( (but you've been coming up not feeling good for the last week!!) trying to get healthy enough to go back up again and not infect him with what ever has invaded my body.
I did make a couple of phone calls to say "he needs company!"
Wow, that was longer than I intended.
I tried to wake up this morning and my body would just not wake up. I was soo drowsy, I just kept falling asleep.
Don called to see when I was coming in, and I told him I couldn't seem to wake up, and he and I agreed I would just sleep till I was slept out.
When I finally woke up, I realized that I was sooo hot. I thought I'd turned the a/c off, or the a/c wasn't working. So I went to check the a/c.
Nope, a/c is just fine ...and blowing.
I swallowed ...and realized ...whoops, the throat hurts.
So I took my temperature ...101.2. Crud.
I called the doctor, they called back. Under normal circumstances, they'd make me come in, but given that they'd just stuck me on prednsione dose pack for the lupus/MG flare, and that I've been exposed for the last month to who knows what around the hospital ... and I'm on Cellcept (immunosuppressant) even if it IS a virus, it could go into a secondary bacterial, and Don doesn't need that exposure. So, stay home till I'm fever free for 24 hours ... and take the antibiotics.
*whew* the last thing I wanted was to drag myself to the doctor's right now. 99 times out of 100, I would cringe out of a doctor giving antibiotics without an exam or proof of bacterial infection. This, is the 1 time out of 100 that I was really hoping they'd just go around the standard rule.
Ya know, I *ALMOST* on gut instinct asked for a script of antibiotics when she started me on the high dose prednisone last week. I've never started on high doses of prednisone without getting sick. I thought about it, and said I promise to let you know if I use them. And thought "nah, that's absurd"
On the Don front.
Sigh. He called last night, they'd come in to weigh him ... he's down to 90.4 pounds. He was 98 lbs when he checked in. They have him on a high calorie, high protien diet and he is eating. I guess the physical exercise is pushing him and burning more calories in trying to build his endurance to gain back what he's lost?
The pulmonologist is trying to give his nose a break and seeing what happens when he's off oxygen when he's just laying down without activity. The nurses, the Respiratory therapists and PT's are not impressed. He was at 98 to 100 on oxygen, and just laying down doing nothing dropped to 94.
However, he's had bloody noses for the last 3 or 4 days. So, at least for a couple of days, as long as it stays at 94 ... we're going to give his nose a chance to heal.
So, today, I'm home, much to my husband's dismay ... :( (but you've been coming up not feeling good for the last week!!) trying to get healthy enough to go back up again and not infect him with what ever has invaded my body.
I did make a couple of phone calls to say "he needs company!"
Wow, that was longer than I intended.
Saturday, June 23, 2007
A Child Alone
It was 1959, He was 3 years old and would not be 4 until November 21st. The summer was hot ...He was the middle child of 5. His mother had given the oldest girl to her older sister to adopt. Not an unusual happening for that generation when a pregnancy happens when it shouldn't and you wanted no one to know.
So as far as the kids and neighbors knew, he was the second to oldest. His older brother was 2 years older, his younger sister 2 years younger, and the baby was a year younger than the sister. Just a baby. Near by, the Grandmother lived and helped in the raising of the 4 kids, and the older sister and her husband also lived, on the same street, raising their adopted daughter, who was the birth daughter of the boys mother. The father, was in the picture as well.
He became sick and was taken to the doctor. His mother heard the words that no mother ever wants to hear ...and at that time, a word that struck fear into the hearts of even the bravest of souls. A word that today, just means a simple 'well baby' trip to the doctor. But back then, it could mean the world would end ... it certainly meant the world as the family knew it was ending.
Polio.
They lived in a small town in Northern California, not too far from Sacramento. The city was too small to handle such a sick baby, and quickly, they transfered the three year old to San Fransisco's Children's hospital.
Just 9 years earlier, it had been a center for the polio epidemic, but polio was on the decrease, thanks to the vaccine. This child, had missed the vaccine. It was being given to school age children in his community, and he was not quite 4.
His father, unable to handle the pressure of 4 kids and one of them terribly ill, just disappeared from their lives, abandoning them all.
His mother took him to San Fransisco, where he was placed on an iron lung. 3 years old, and in an iron lung, in a hospital far from home ... with strangers ... and away from everything familiar.
His mother, having 3 other children at home, decided to leave him in the care of the strangers at the hospital. I've tried and tried for 20 years to see this through her eyes, and no matter how hard I try, I simply cannot. I've had sick children ... I've had very sick children. I've sat in the hospital with a child that was sick with pneumonia. I've sat in the hospital with a child with meningitis ... and while I don't know what it is like to have a child with polio, I do know what it is to have a sick child.
I do know what it is to have to make the choice between the child at home and the child that is sick ..and I don't get it. There was an Aunt and Uncle and Grandmother to step in for the 3 healthy children back home ... and there was no one in San Franscisco but nurses and doctor's for the three year old boy in the iron lung
Over the next 6 years, the child would spend half of his childhood going through surgeries, and therapy ... in and out of San Fransisco Children's ... spending birthdays and holidays with nurses to celebrate for him. His playmates were the other children in the ward, and his teachers were the nurses.
I've been asked by several people why I go up to the hospital for 5, 6 8 to 10 hours a day to sit with my husband ... why I'm wearing myself into the ground. He's a big boy ...he can entertain himself ... most adults do, and get by with visits. They remind me that I've been in the hospital 26 times and I don't need this kind of care ...and for some I just say I know ... and for others I tell them about the three year old left alone ... in the iron lung
The six year old who had back surgery, to fuse his back 2/3 of the way ...or the 10 year old who had nurses to throw his birthday party.
I see his eyes light up when I walk into the room and his face drop when I tell him I'm going to leave. If I had it physically within my body, I'd be with him 24/7.
He may be a 51 year old man, but his soul is a 3 year old who's been abandoned once again ... and he's been there for a month today ..and he knows he has a few weeks ahead of him.
So as far as the kids and neighbors knew, he was the second to oldest. His older brother was 2 years older, his younger sister 2 years younger, and the baby was a year younger than the sister. Just a baby. Near by, the Grandmother lived and helped in the raising of the 4 kids, and the older sister and her husband also lived, on the same street, raising their adopted daughter, who was the birth daughter of the boys mother. The father, was in the picture as well.
He became sick and was taken to the doctor. His mother heard the words that no mother ever wants to hear ...and at that time, a word that struck fear into the hearts of even the bravest of souls. A word that today, just means a simple 'well baby' trip to the doctor. But back then, it could mean the world would end ... it certainly meant the world as the family knew it was ending.
Polio.
They lived in a small town in Northern California, not too far from Sacramento. The city was too small to handle such a sick baby, and quickly, they transfered the three year old to San Fransisco's Children's hospital.
Just 9 years earlier, it had been a center for the polio epidemic, but polio was on the decrease, thanks to the vaccine. This child, had missed the vaccine. It was being given to school age children in his community, and he was not quite 4.
His father, unable to handle the pressure of 4 kids and one of them terribly ill, just disappeared from their lives, abandoning them all.
His mother took him to San Fransisco, where he was placed on an iron lung. 3 years old, and in an iron lung, in a hospital far from home ... with strangers ... and away from everything familiar.
His mother, having 3 other children at home, decided to leave him in the care of the strangers at the hospital. I've tried and tried for 20 years to see this through her eyes, and no matter how hard I try, I simply cannot. I've had sick children ... I've had very sick children. I've sat in the hospital with a child that was sick with pneumonia. I've sat in the hospital with a child with meningitis ... and while I don't know what it is like to have a child with polio, I do know what it is to have a sick child.
I do know what it is to have to make the choice between the child at home and the child that is sick ..and I don't get it. There was an Aunt and Uncle and Grandmother to step in for the 3 healthy children back home ... and there was no one in San Franscisco but nurses and doctor's for the three year old boy in the iron lung
Over the next 6 years, the child would spend half of his childhood going through surgeries, and therapy ... in and out of San Fransisco Children's ... spending birthdays and holidays with nurses to celebrate for him. His playmates were the other children in the ward, and his teachers were the nurses.
I've been asked by several people why I go up to the hospital for 5, 6 8 to 10 hours a day to sit with my husband ... why I'm wearing myself into the ground. He's a big boy ...he can entertain himself ... most adults do, and get by with visits. They remind me that I've been in the hospital 26 times and I don't need this kind of care ...and for some I just say I know ... and for others I tell them about the three year old left alone ... in the iron lung
The six year old who had back surgery, to fuse his back 2/3 of the way ...or the 10 year old who had nurses to throw his birthday party.
I see his eyes light up when I walk into the room and his face drop when I tell him I'm going to leave. If I had it physically within my body, I'd be with him 24/7.
He may be a 51 year old man, but his soul is a 3 year old who's been abandoned once again ... and he's been there for a month today ..and he knows he has a few weeks ahead of him.
Friday, June 22, 2007
more
Sometime later next week, Don will be moved from the L TAC to the rehab hospital.
The doctor said he will be there for at least two weeks, if not 3 to 4 weeks.
In rehab he will get more intensive therapy to increase his endurance.
I'm exhausted, and weary.
I've found myself pulling into a hole ...and not calling people or reaching out. I've not even been to church in weeks.
I had a conversation with my pastor a couple of years back asking him why we have to depend on our brothers and sisters in Christ, if we know how to recieve comfort from God and he gave me an answer that just frustrated me. I know now that I made a mistake in not learning the lesson he tried to teach me.
As it is, I don't know how to say to those close to me ... help. I'm alone, and scared and stuck. The people I'm telling what's going on are out of town, out of state ...and across the internet. I text messaged my pastor (former pastor) and told him that I'm isolating a little ...and within 20 minutes, I got a phone call from my dear friend Wanda (from Wanda's Wings) and she said "how ya doing?" I said fine her response was "Pinocchio"
She'd been called and told to check on me. Whoops.
Our youth pastor warned me of being careful to not get caretakers fatique ... I'm don't know how you know when you have caretakers fatique ... but I know that I was glad to see the kids come back to camp, but I find the idea of going to church almost terrifying.
I think the questions of "how are you, how is Don" will be overwhelming. I know that I will be hugged by people I don't want to be hugged by ...and I know I will have to repeat what's going on more times than I can count ... so it's easier to just not go. The more I stay away, the easier it is to just not go.
So, here I am, hiding in my home and in my husband's hospital room, updating people only through on line measures ... and not making calls to friends to say 'hey! I'm lonely' or going to get a cup of coffee with a friend or go do something interesting ... and I know that all of this is draining me and the more I do it, it's all I can do.
What is feeding me? Nothing, literally nothing....not spiritually, not emotionally, not nutritionally. My food intake has dropped to little to nothing ... a few bites of fruit or veggies ... and every third day or so I might eat part of a real meal.
I see myself sinking and part of me feels like it's ok. When Don is ok, I'll pull myself up. The other part of me just wants to sit down and say I've fought for so many years I don't want to fight anymore. The other part of me just wants to say ...someone needs to fight for me ..only I don't want to reach out to anyone to tell them I just don't have any fight left.
The doctor said he will be there for at least two weeks, if not 3 to 4 weeks.
In rehab he will get more intensive therapy to increase his endurance.
I'm exhausted, and weary.
I've found myself pulling into a hole ...and not calling people or reaching out. I've not even been to church in weeks.
I had a conversation with my pastor a couple of years back asking him why we have to depend on our brothers and sisters in Christ, if we know how to recieve comfort from God and he gave me an answer that just frustrated me. I know now that I made a mistake in not learning the lesson he tried to teach me.
As it is, I don't know how to say to those close to me ... help. I'm alone, and scared and stuck. The people I'm telling what's going on are out of town, out of state ...and across the internet. I text messaged my pastor (former pastor) and told him that I'm isolating a little ...and within 20 minutes, I got a phone call from my dear friend Wanda (from Wanda's Wings) and she said "how ya doing?" I said fine her response was "Pinocchio"
She'd been called and told to check on me. Whoops.
Our youth pastor warned me of being careful to not get caretakers fatique ... I'm don't know how you know when you have caretakers fatique ... but I know that I was glad to see the kids come back to camp, but I find the idea of going to church almost terrifying.
I think the questions of "how are you, how is Don" will be overwhelming. I know that I will be hugged by people I don't want to be hugged by ...and I know I will have to repeat what's going on more times than I can count ... so it's easier to just not go. The more I stay away, the easier it is to just not go.
So, here I am, hiding in my home and in my husband's hospital room, updating people only through on line measures ... and not making calls to friends to say 'hey! I'm lonely' or going to get a cup of coffee with a friend or go do something interesting ... and I know that all of this is draining me and the more I do it, it's all I can do.
What is feeding me? Nothing, literally nothing....not spiritually, not emotionally, not nutritionally. My food intake has dropped to little to nothing ... a few bites of fruit or veggies ... and every third day or so I might eat part of a real meal.
I see myself sinking and part of me feels like it's ok. When Don is ok, I'll pull myself up. The other part of me just wants to sit down and say I've fought for so many years I don't want to fight anymore. The other part of me just wants to say ...someone needs to fight for me ..only I don't want to reach out to anyone to tell them I just don't have any fight left.
Blessed Be The Name
Blessed Be Your Name
by Matt Redman- - -
Blessed Be Your Name
In the land that is plentiful
Where Your streams of abundance flow
Blessed be Your name
Blessed Be Your name
When I'm found in the desert place
Though I walk through the wilderness
Blessed Be Your name
Every blessing You pour out
I'll turn back to praise
When the darkness closes in, Lord
Still I will say
Blessed be the name of the Lord
Blessed be Your name
Blessed be the name of the Lord
Blessed be Your glorious name
Blessed be Your name
When the sun's shining down on me
When the world's 'all as it should be'
Blessed be Your name
Blessed be Your name
On the road marked with suffering
Though there's pain in the offering
Blessed be Your name
Every blessing You pour out
I'll turn back to praise
When the darkness closes in, Lord
Still I will say
Blessed be the name of the Lord
Blessed be Your name
Blessed be the name of the Lord
Blessed be Your glorious name
Blessed be the name of the Lord
Blessed be Your name
Blessed be the name of the Lord
Blessed be Your glorious name
You give and take away
You give and take away
My heart will choose to say
Lord, blessed be Your name
by Matt Redman- - -
Blessed Be Your Name
In the land that is plentiful
Where Your streams of abundance flow
Blessed be Your name
Blessed Be Your name
When I'm found in the desert place
Though I walk through the wilderness
Blessed Be Your name
Every blessing You pour out
I'll turn back to praise
When the darkness closes in, Lord
Still I will say
Blessed be the name of the Lord
Blessed be Your name
Blessed be the name of the Lord
Blessed be Your glorious name
Blessed be Your name
When the sun's shining down on me
When the world's 'all as it should be'
Blessed be Your name
Blessed be Your name
On the road marked with suffering
Though there's pain in the offering
Blessed be Your name
Every blessing You pour out
I'll turn back to praise
When the darkness closes in, Lord
Still I will say
Blessed be the name of the Lord
Blessed be Your name
Blessed be the name of the Lord
Blessed be Your glorious name
Blessed be the name of the Lord
Blessed be Your name
Blessed be the name of the Lord
Blessed be Your glorious name
You give and take away
You give and take away
My heart will choose to say
Lord, blessed be Your name
Wednesday, June 20, 2007
4 weeks
Today has been 4 weeks since Don went into the hospital.
What a month it has been.
I am exhausted, and weary at this point. I'm unsure of what we're facing in the future ...how much recovery he'll gain ...and what that means for us as a family.
He's lonely at the hospital, and I'm needing to be there with him for most of the day. He says I don't, but then when the idea of me leaving, or not come in until later in the day comes, you can see the anxiety build.
What we know at this point: he will be on oxygen from now on. They will not be weaning him off of it ...at all. It will be a 24 hour a day thing for life. He will be on a bipap from now on.
They are discussing the possibility of ordering a wheelchair. They will be ordering a walker. How long it will take him for him to be able to ambulate without the walker, we have no idea. We also don't know if he will. We're in limbo at this point. We don't know what our new version of normal will be, and we don't know how long it will be before we know what our new version of normal will be.
The nurses, PT's and OT's are so excited because he can do so much more than they'd ever expected him to do. They don't understand our discouragement, frustration and fear. They just don't seem to realize that he really was NOT sedentary ...and that getting used to the idea of having to live on oxygen, and having to get used to the possibility of needing walking assistance ...and wondering how long it will be before he can just decide to go out by himself and get a cup of coffee ... IF he'll ever be able to do that again.
On the mom front, when she fell and broke her finger, the day after Don was hospitalized (no, not the broken hand & ribs, that was a few weeks before this) she'd also injured her knee. She had an MRI and today we got the results. A piece of bone had broken off and is floating around the knee cap. The ortho doc gave her a shot in hopes to settle down the inflammation. Mom is not willing to have him operate to take the bone out right now. I can't say that I was cheering for her to opt for the surgery option at this point.
The reality is, she needs that knee replaced and he is probably going to try to talk her into just doing the whole thing when it's time. It's going to take quite the talking with as much trouble as she had with the first knee replacement.
Monday she went to the PCP to talk about her falling and her memory issues. I had to drop my kids off at church for church camp and was not able to be there. She knew this, and immediately called me and asked to have Samuel come over to help with some chores (um ...hello?).
I see the PCP tomorrow at my psychologists request ... because ...in her words ... I look awful ... lupus rash, low muscle tone in my face, sighing between sentences ... in other words: autoimmune mess. I will ask PCP about her impressions then.
I will also most likely get a prednisone dose pack for me.
We have no estimate of discharge yet, it's not on the table yet. So it will be at least next week, if not the following week, they are not in a hurry. He has a long way to go before he's ready to come home.
What a month it has been.
I am exhausted, and weary at this point. I'm unsure of what we're facing in the future ...how much recovery he'll gain ...and what that means for us as a family.
He's lonely at the hospital, and I'm needing to be there with him for most of the day. He says I don't, but then when the idea of me leaving, or not come in until later in the day comes, you can see the anxiety build.
What we know at this point: he will be on oxygen from now on. They will not be weaning him off of it ...at all. It will be a 24 hour a day thing for life. He will be on a bipap from now on.
They are discussing the possibility of ordering a wheelchair. They will be ordering a walker. How long it will take him for him to be able to ambulate without the walker, we have no idea. We also don't know if he will. We're in limbo at this point. We don't know what our new version of normal will be, and we don't know how long it will be before we know what our new version of normal will be.
The nurses, PT's and OT's are so excited because he can do so much more than they'd ever expected him to do. They don't understand our discouragement, frustration and fear. They just don't seem to realize that he really was NOT sedentary ...and that getting used to the idea of having to live on oxygen, and having to get used to the possibility of needing walking assistance ...and wondering how long it will be before he can just decide to go out by himself and get a cup of coffee ... IF he'll ever be able to do that again.
On the mom front, when she fell and broke her finger, the day after Don was hospitalized (no, not the broken hand & ribs, that was a few weeks before this) she'd also injured her knee. She had an MRI and today we got the results. A piece of bone had broken off and is floating around the knee cap. The ortho doc gave her a shot in hopes to settle down the inflammation. Mom is not willing to have him operate to take the bone out right now. I can't say that I was cheering for her to opt for the surgery option at this point.
The reality is, she needs that knee replaced and he is probably going to try to talk her into just doing the whole thing when it's time. It's going to take quite the talking with as much trouble as she had with the first knee replacement.
Monday she went to the PCP to talk about her falling and her memory issues. I had to drop my kids off at church for church camp and was not able to be there. She knew this, and immediately called me and asked to have Samuel come over to help with some chores (um ...hello?).
I see the PCP tomorrow at my psychologists request ... because ...in her words ... I look awful ... lupus rash, low muscle tone in my face, sighing between sentences ... in other words: autoimmune mess. I will ask PCP about her impressions then.
I will also most likely get a prednisone dose pack for me.
We have no estimate of discharge yet, it's not on the table yet. So it will be at least next week, if not the following week, they are not in a hurry. He has a long way to go before he's ready to come home.
Monday, June 18, 2007
Father's Day
Today was Father's Day.
It's the first Father's Day I spent with my real father since I was 13. He's been in town for the last week. I only spent about 30 minutes with him, he came up to the hospital to see Don and the boys and I. My sister's family had been passing around a respiratory infection ..and my Dad caught it, so he was wearing a mask. I'd suggested (strongly) that coming up was not a good idea, but he came anyway, insisting that he wanted to see Don one more time. He told Don on the phone that it was just a sore throat. Then when they got ready to leave the room (they leave town tomorrow) K (his new wife) said that the night before he'd been coughing so bad he'd not even been able to lie down to sleep and had to sleep sitting up. I, was not amused. The mask had better have been enough to keep from passing the germs on. It's obviously highly contagious because it made the rounds through my sisters kids, then onto my Dad ... it's the last thing Don needs and I take strong drugs to suppress my immune system (Cellcept and prednisone).
A friend came by to see Don, and brought her 2 children. They'd used their Bible bucks at church to buy Don father's day gifts. They don't have a father in their lives. They adore Don, and they look to him for leadership and as a male role model. They love him dearly. It touched Don more than anyone could have imagined. Including my own kids. They were so proud of their little friends, and so happy to share their Dad with the kids ... it was really special.
Don has a particular gift he wants ... and it's specific, and he and the boys are supposed to get it together. So, we were waiting till he got out of the hospital so they can go get it together ...rather than me messing it up and getting the wrong one. (tecno gadget MP3 player). The boys were just tickled Daddy got to open something on Father's Day. Don was worried they'd feel bad ...and they were so relieved he had something to open.
Don, is getting very depressed over his lack of progress in gaining strength and mobility. With no permanent answers, and the possibility of this new lifestyle change ...dependency ..adjustment ... it's hard. My heart is breaking for him. I'm so glad that I've made the choice to stay with him this week. I know he said he wanted me to go to camp, but emotionally, he really could not have taken me being gone this week.
I'm really getting weary ...and today has been particularly hard. I was walking down the hallway of the hospital and just got suddenly angry at my step father for not being here ... for leaving me when I was 14 ... I need his support and unconditional love right now. I need those strong loving arms right now that will tell me that all will be ok ...that regardless .. he's there ...only ... he's not ..and he never will be again.
Tomorrow, my mom goes in for an evaluation with the PCP, again, for her frequent falling (did I post that the day after Don was admitted to the hospital that she broke her finger? ... the forefinger on the hand with the cast ...that made 5 bones in 9 weeks that she'd broken) and she's also going to include her jerky movements, her inability to complete thoughts and her forgetfulness.
I'm supposed to be there, but I have to take my kids to the church to take them to camp. I can't be in 2 places at one time ... I had to make a choice. As much as I've been fighting to get my mom some help, I really need to take my kids and to be able to hug 'my girl's' and explain to them why I'm not going to camp.
The PCP appointment is to get a referral to a neurologist ...so hopefully I will be able to accompany her on that appointment. In the meantime, maybe me not being there to interpret what's going on just might do more good in getting a diagnosis than if I am there??? Maybe if they can't follow her, they'll get what we're dealing with. Maybe I'm just wishful thinking. Right now, that has to be left in God's hands.
I wish I had better news ... Today (Father's day) is 26 days in the hospital. We're both so weary and trying so hard to not be weary. I think, if we had some answers besides "we'll know more in 6 months" it would be so much easier.
It's the first Father's Day I spent with my real father since I was 13. He's been in town for the last week. I only spent about 30 minutes with him, he came up to the hospital to see Don and the boys and I. My sister's family had been passing around a respiratory infection ..and my Dad caught it, so he was wearing a mask. I'd suggested (strongly) that coming up was not a good idea, but he came anyway, insisting that he wanted to see Don one more time. He told Don on the phone that it was just a sore throat. Then when they got ready to leave the room (they leave town tomorrow) K (his new wife) said that the night before he'd been coughing so bad he'd not even been able to lie down to sleep and had to sleep sitting up. I, was not amused. The mask had better have been enough to keep from passing the germs on. It's obviously highly contagious because it made the rounds through my sisters kids, then onto my Dad ... it's the last thing Don needs and I take strong drugs to suppress my immune system (Cellcept and prednisone).
A friend came by to see Don, and brought her 2 children. They'd used their Bible bucks at church to buy Don father's day gifts. They don't have a father in their lives. They adore Don, and they look to him for leadership and as a male role model. They love him dearly. It touched Don more than anyone could have imagined. Including my own kids. They were so proud of their little friends, and so happy to share their Dad with the kids ... it was really special.
Don has a particular gift he wants ... and it's specific, and he and the boys are supposed to get it together. So, we were waiting till he got out of the hospital so they can go get it together ...rather than me messing it up and getting the wrong one. (tecno gadget MP3 player). The boys were just tickled Daddy got to open something on Father's Day. Don was worried they'd feel bad ...and they were so relieved he had something to open.
Don, is getting very depressed over his lack of progress in gaining strength and mobility. With no permanent answers, and the possibility of this new lifestyle change ...dependency ..adjustment ... it's hard. My heart is breaking for him. I'm so glad that I've made the choice to stay with him this week. I know he said he wanted me to go to camp, but emotionally, he really could not have taken me being gone this week.
I'm really getting weary ...and today has been particularly hard. I was walking down the hallway of the hospital and just got suddenly angry at my step father for not being here ... for leaving me when I was 14 ... I need his support and unconditional love right now. I need those strong loving arms right now that will tell me that all will be ok ...that regardless .. he's there ...only ... he's not ..and he never will be again.
Tomorrow, my mom goes in for an evaluation with the PCP, again, for her frequent falling (did I post that the day after Don was admitted to the hospital that she broke her finger? ... the forefinger on the hand with the cast ...that made 5 bones in 9 weeks that she'd broken) and she's also going to include her jerky movements, her inability to complete thoughts and her forgetfulness.
I'm supposed to be there, but I have to take my kids to the church to take them to camp. I can't be in 2 places at one time ... I had to make a choice. As much as I've been fighting to get my mom some help, I really need to take my kids and to be able to hug 'my girl's' and explain to them why I'm not going to camp.
The PCP appointment is to get a referral to a neurologist ...so hopefully I will be able to accompany her on that appointment. In the meantime, maybe me not being there to interpret what's going on just might do more good in getting a diagnosis than if I am there??? Maybe if they can't follow her, they'll get what we're dealing with. Maybe I'm just wishful thinking. Right now, that has to be left in God's hands.
I wish I had better news ... Today (Father's day) is 26 days in the hospital. We're both so weary and trying so hard to not be weary. I think, if we had some answers besides "we'll know more in 6 months" it would be so much easier.
Saturday, June 16, 2007
Hiatus
Today, I just made a really hard phone call.
I called a friend, who happens to be an elder of our church, and a member of our church transition team, and told her that I needed to take a hiatus from all my responsibilities at church.
From the worship team secretary, to youth group counselor & youth group sunday school assistant ... ministry team representative for worship team & children's ministry ... small group leader.
I don't even know what all I do ... I just do it.
Right now, we have no answers ... they don't know if the weakness & nerve pain in his hands and arms & legs that are interferring with his functioning is because of the degree of combativeness that he had ...and the scoliosis and the displaced spinal cord and foramen ... and therefore damaged while he was fighting us ...
or were the nerves just bruised and will they heal ... it could take up to 6 months before we know if he will regain any of the use of his arms and legs enough to know.
Right now, he can't take care of himself. He can't stand up on his own, he can't dress himself, and he has to have help to get up just to go to the bathroom. He even gets exhausted feeding himself.
He is still in need of oxygen just to exist in bed and to do what he is doing.
Today was day 25 in the hospital ... we're both on the weary side.
I called a friend, who happens to be an elder of our church, and a member of our church transition team, and told her that I needed to take a hiatus from all my responsibilities at church.
From the worship team secretary, to youth group counselor & youth group sunday school assistant ... ministry team representative for worship team & children's ministry ... small group leader.
I don't even know what all I do ... I just do it.
Right now, we have no answers ... they don't know if the weakness & nerve pain in his hands and arms & legs that are interferring with his functioning is because of the degree of combativeness that he had ...and the scoliosis and the displaced spinal cord and foramen ... and therefore damaged while he was fighting us ...
or were the nerves just bruised and will they heal ... it could take up to 6 months before we know if he will regain any of the use of his arms and legs enough to know.
Right now, he can't take care of himself. He can't stand up on his own, he can't dress himself, and he has to have help to get up just to go to the bathroom. He even gets exhausted feeding himself.
He is still in need of oxygen just to exist in bed and to do what he is doing.
Today was day 25 in the hospital ... we're both on the weary side.
Tuesday, June 12, 2007
Updating on a rollercoaster
Today, I went into the hospital to see my husband as usual. When I arrived, the physical therapist had just cajoled him out of bed to work on his endurance and taking a few steps. He'd really not felt good and had to be talked into it, but he was.
He walked about halfway down the hall with the walker and the PT supporting him. By the time he got there, he was almost angry. I can't say I blame him. 21 days today. And he's been couped up and tied up to machines, and he's just facing such an unknown.
The doctor came up while he was trying to get walking again. She told us the news that Don most did not want to hear. That the existing problem ( C5/C6 movement, with exposed spinal cord) was worsened, significanlty. It's now the C5/C6 & C6/C7 and the spinal cord is displaced with (?iffy on medical facts here, not sure I fully understand) the foramen exposed as well.
This, is what's causing the extreme pain and weakness in his arms. Which, for him, IS his mobility. His arms propel him while he walks, they lift him to a standing position and help to stablize him. But at least he's going, for now. The pain from the spinal issue is causing significant pain in his hands though, and gripping the walker is quite difficult. He dropped his fork several times today and could not lift the cover off the food with his right hand. The loss of control has us very concerned.
If the EMG is right... the damage is done, and as long as the nerves are compressed in the neck, there is nothing that can be done ... and well, with Don's repsiratory system, he's not a candidate for the surgery.
They also think the C5/C6 exposure is what is increasing his breathing difficulties. The C5 is what effects the breathing & swallowing muscles.
So, once again, we are waiting to see ... what's next and where we go from here.
He walked about halfway down the hall with the walker and the PT supporting him. By the time he got there, he was almost angry. I can't say I blame him. 21 days today. And he's been couped up and tied up to machines, and he's just facing such an unknown.
The doctor came up while he was trying to get walking again. She told us the news that Don most did not want to hear. That the existing problem ( C5/C6 movement, with exposed spinal cord) was worsened, significanlty. It's now the C5/C6 & C6/C7 and the spinal cord is displaced with (?iffy on medical facts here, not sure I fully understand) the foramen exposed as well.
This, is what's causing the extreme pain and weakness in his arms. Which, for him, IS his mobility. His arms propel him while he walks, they lift him to a standing position and help to stablize him. But at least he's going, for now. The pain from the spinal issue is causing significant pain in his hands though, and gripping the walker is quite difficult. He dropped his fork several times today and could not lift the cover off the food with his right hand. The loss of control has us very concerned.
If the EMG is right... the damage is done, and as long as the nerves are compressed in the neck, there is nothing that can be done ... and well, with Don's repsiratory system, he's not a candidate for the surgery.
They also think the C5/C6 exposure is what is increasing his breathing difficulties. The C5 is what effects the breathing & swallowing muscles.
So, once again, we are waiting to see ... what's next and where we go from here.
Tuesday, June 05, 2007
Interpretations
I thought Don was doing so well ... and today, a reality check. We're waiting to get him into the Long Term Care facility ...and one doctor is holding it up. We're not sure why. We find out today, it's because he doesn't come over there daily ... the specialists just come over there occassionally ... once or twice a week.
Don has to be stable enough to not need HIS care daily. Oh. So, Don has to become stable enough to move him to this long term care facility for Critically Ill patients .... oh.
Reality check time. He's better, he's significantly better. He's but he's still very sick.
The doctors are a little frustrated with him wanting one thing one day and then not agreeing to it when they go to do it. Either they're not listening, or they're not understanding that they haven't made themselves clear to us. They haven't explained to us how the Bipap machine works ..and why he can't be on oxygen for 4 hours and then on the Bipap for 2 hours, off for 4 hours .. and only today was I told, it can't be done that way ... I still don't know why ...just that it can't. They are seeing him as non compliant, and we are not understanding and asking for explination. The really frustrating thing ...this is my most beloved doctor in the whole world ... I love this man dearly and when Don was so sick and his partner was seeing Don (his partner is on vactation, so he is seeing him now) Dr. G saw me, gave me a hug and I just kind of fell and melted and started to cry, he let me cry and just held me.
We have a 10 year relationship ... and I knew his Mamma for 5 years before that. His mom had myasthenia and had it from the time he was a teenager. It's not like he doesn't get serious illness ... he gets it all too well ... and from the family side of it ...
Somewhere there is a glitch and I'm not sure where ... we do know he's doing medically right by Don, we're just confused. The poor hospitalist thinks that there is a conflict between us ...and doens't realize that we simply asked him the questions because we were unsure of what was going on ... No, we will always love Dr. G ... but we also trust him enough to ask him questions, either directly, or ask the person who's going to talk to him next ...to tell him ..these are our concerns.
But somehow, it's making Don look like he's not being cooperative ... I think the breakdown is happening at the Respiratory Therapist level ... instead of taking the time to listen to Don and answer his questions and find out for him what the doctor means ... they just say "well, you can refuse treatment if you want" and then hook him back up to oxygen and don't mess with it, or leave him hooked up to the bipap for extra time ...
This should change in the long term care ...
Don has to be stable enough to not need HIS care daily. Oh. So, Don has to become stable enough to move him to this long term care facility for Critically Ill patients .... oh.
Reality check time. He's better, he's significantly better. He's but he's still very sick.
The doctors are a little frustrated with him wanting one thing one day and then not agreeing to it when they go to do it. Either they're not listening, or they're not understanding that they haven't made themselves clear to us. They haven't explained to us how the Bipap machine works ..and why he can't be on oxygen for 4 hours and then on the Bipap for 2 hours, off for 4 hours .. and only today was I told, it can't be done that way ... I still don't know why ...just that it can't. They are seeing him as non compliant, and we are not understanding and asking for explination. The really frustrating thing ...this is my most beloved doctor in the whole world ... I love this man dearly and when Don was so sick and his partner was seeing Don (his partner is on vactation, so he is seeing him now) Dr. G saw me, gave me a hug and I just kind of fell and melted and started to cry, he let me cry and just held me.
We have a 10 year relationship ... and I knew his Mamma for 5 years before that. His mom had myasthenia and had it from the time he was a teenager. It's not like he doesn't get serious illness ... he gets it all too well ... and from the family side of it ...
Somewhere there is a glitch and I'm not sure where ... we do know he's doing medically right by Don, we're just confused. The poor hospitalist thinks that there is a conflict between us ...and doens't realize that we simply asked him the questions because we were unsure of what was going on ... No, we will always love Dr. G ... but we also trust him enough to ask him questions, either directly, or ask the person who's going to talk to him next ...to tell him ..these are our concerns.
But somehow, it's making Don look like he's not being cooperative ... I think the breakdown is happening at the Respiratory Therapist level ... instead of taking the time to listen to Don and answer his questions and find out for him what the doctor means ... they just say "well, you can refuse treatment if you want" and then hook him back up to oxygen and don't mess with it, or leave him hooked up to the bipap for extra time ...
This should change in the long term care ...
Monday, June 04, 2007
Rough Day
Today is a rough day.
They haven't moved him yet to the Long Term Care facility.
They did get him an air mattress so that it protects his skin and joints. It took them about 30 minutes and he was in a chair the whole time. It completely wiped him out, and 3 hours later, he still had not recovered.
His hours on the Bipap have been changed to 9 pm to 8 am, solid then from noon till 5pm. So he'll be off of it from 8 am to noon, and 5 to 9.
So, he'll have 8 hours a day off, and during times that he can visit with people.
He was hurting so bad today. His right arm is hurting and there is some numbness. He keeps having it jerk, almost like you'd see in some parkinsons patients. It woke him up 2 times this afternoon when he hit the bedrail. He is loosing some control over it. The doctors are aware of it, and are watching it carefully. It is something they will address in the long term care facility.
Today was a tiring day, for both of us. I don't know why we both felt kind of discouraged and tired.
I left the hospital a little early and decided I wasn't ready to face home ..and ran away ... I went to an IHOP and then called my friend Teresa, the one who lost the baby girl a few weeks ago. I was going to ask her if she could come up and sit with me. I called her and told her I'd kind of ran away and was hiding from the world and she said "Oh, I'm up at IHOP talking with J & R" *blink*
Thanks God ... you knew just what I needed.
They haven't moved him yet to the Long Term Care facility.
They did get him an air mattress so that it protects his skin and joints. It took them about 30 minutes and he was in a chair the whole time. It completely wiped him out, and 3 hours later, he still had not recovered.
His hours on the Bipap have been changed to 9 pm to 8 am, solid then from noon till 5pm. So he'll be off of it from 8 am to noon, and 5 to 9.
So, he'll have 8 hours a day off, and during times that he can visit with people.
He was hurting so bad today. His right arm is hurting and there is some numbness. He keeps having it jerk, almost like you'd see in some parkinsons patients. It woke him up 2 times this afternoon when he hit the bedrail. He is loosing some control over it. The doctors are aware of it, and are watching it carefully. It is something they will address in the long term care facility.
Today was a tiring day, for both of us. I don't know why we both felt kind of discouraged and tired.
I left the hospital a little early and decided I wasn't ready to face home ..and ran away ... I went to an IHOP and then called my friend Teresa, the one who lost the baby girl a few weeks ago. I was going to ask her if she could come up and sit with me. I called her and told her I'd kind of ran away and was hiding from the world and she said "Oh, I'm up at IHOP talking with J & R" *blink*
Thanks God ... you knew just what I needed.
Sunday, June 03, 2007
Faithful
I woke up today and had decided to go ahead and go to church. It's been quite a while since I was sick before all this happened with Don.
I got dressed in a black jumper dress, tourquoise blouse, and black shoes. I went to choose my jewelry and decided on some that meant something to me. To others, it would just be Peggikaye in her elephants again.
To me, it was not just because I like elephants, but, a while back I figured out what it was about elephants that facinated me so. It all came down to Dr. Suess.
I meant what I said
And I said what I meant....
An elephant's faithful
One hundred per cent!
Faithfulness. Today, I wore a tangible reminder of faithfulness. A necklace a friend gave me, a bracelet my husband gave me, an anklet I bought with a gift certificate someone else gave me. All elephants.
God's faithfulness to me ... and my friends faithfulness to me ... the faithfulness has been more than visible this last 2 weeks, but tangible.
Tonight, as I sat next to Don, while he slept on the Bipap, some questions still unanswered, not knowing what lies ahead ... I knew one thing was for sure. God was with us. God had been with us through the last 11 days or so ...and God would be with us.
It is strange ... to feel so worn out, so tired, so ... weary ... to have so many questions looming in the air ...
and yet, to feel so comforted, and so peaceful ...and to feel so confident at the same time.
I guess, the scripture that says that in our weakness, He is made strong ... is how this is lived out. Every moment, I must lean on God's strength, God's wisdom and God's faithfulness ...
My new counselor asked me at my second session when I'd felt safe in my life. Really safe ... it hasn't been often. There hasn't been a whole lot of security.
I told her about the dark times in my marriage and how the sanctuary in my church provided that safety for me. How Sanctuary, became more than a archetectual term, but lived out it's original meaning for me. It was my place of safety for a long time.
And now, this last 11 days, ironically ... I have felt that safety ... that sanctuary ... that I am safe in God's arms ... never closer to God as I have been in the last few days ... as tired, and weary and battle worn ...
I am sure of this one thing ... I know whom I have believed, and He is able to keep that which I've committed, unto Him, until that day.
What's more ... my husband, is one of those things I've committed ... and I'm sure he can keep my husband and the things that he has committed as well.
I got dressed in a black jumper dress, tourquoise blouse, and black shoes. I went to choose my jewelry and decided on some that meant something to me. To others, it would just be Peggikaye in her elephants again.
To me, it was not just because I like elephants, but, a while back I figured out what it was about elephants that facinated me so. It all came down to Dr. Suess.
I meant what I said
And I said what I meant....
An elephant's faithful
One hundred per cent!
Faithfulness. Today, I wore a tangible reminder of faithfulness. A necklace a friend gave me, a bracelet my husband gave me, an anklet I bought with a gift certificate someone else gave me. All elephants.
God's faithfulness to me ... and my friends faithfulness to me ... the faithfulness has been more than visible this last 2 weeks, but tangible.
Tonight, as I sat next to Don, while he slept on the Bipap, some questions still unanswered, not knowing what lies ahead ... I knew one thing was for sure. God was with us. God had been with us through the last 11 days or so ...and God would be with us.
It is strange ... to feel so worn out, so tired, so ... weary ... to have so many questions looming in the air ...
and yet, to feel so comforted, and so peaceful ...and to feel so confident at the same time.
I guess, the scripture that says that in our weakness, He is made strong ... is how this is lived out. Every moment, I must lean on God's strength, God's wisdom and God's faithfulness ...
My new counselor asked me at my second session when I'd felt safe in my life. Really safe ... it hasn't been often. There hasn't been a whole lot of security.
I told her about the dark times in my marriage and how the sanctuary in my church provided that safety for me. How Sanctuary, became more than a archetectual term, but lived out it's original meaning for me. It was my place of safety for a long time.
And now, this last 11 days, ironically ... I have felt that safety ... that sanctuary ... that I am safe in God's arms ... never closer to God as I have been in the last few days ... as tired, and weary and battle worn ...
I am sure of this one thing ... I know whom I have believed, and He is able to keep that which I've committed, unto Him, until that day.
What's more ... my husband, is one of those things I've committed ... and I'm sure he can keep my husband and the things that he has committed as well.
Friday, June 01, 2007
TALK About it Talk ABOUT it Talk about IT
First, the update. Every question posted in the previous post is still on the table. They are moving him to a long term care facility. We will see if we can get him off the external ventilation during the day, or if this will be a way of life, and if, he is willing to live a life this way if he cannot get off the machinery.
He will most likely have a brand new baseline in life. Oxygen full time, and most likely, walking again, isn't going to happen.
Questions are being shot at me right and left about what can the church do for me. What calls need to be made to Habitat to accomodate our house ...what do we need to do.
The answer is simple. Nothing.
While we were really not prepared for this to happen in reality, in practicality, we honestly did know it was going to happen. There is no step leading to our house. There is a ramp from the driveway to our door. The doorways are an inch wider than most ..and the bathtub has a bar. This house was built with the idea that one day, the post polio would become an issue for Don, and we did not want to have to modify the house at that time.
The decisions to be made about machines, and life sustaining are simply a matter of what amount of healing, restoration can we gain for his body. How much recovery can he get. The choices he's made, have long since been made, discussed, talked about till we were blue in the face. I could recite them on ambien. In the middle of chaos, I know exactly what his choices are ...and this weekend, I knew on the worst day, when he was crashing, and it was clear that things could go sour very fast, what choices might have to be made. We'd talked so often, and so thoroughly, there simply is no questions of 'what does he want?'
Our faith, is so solid, we feel the presence of God, strong ..and solid .. in the middle of this horrible storm, we know beyond a shadow of a doubt, that He is there ...and that we are in the palm of His hand.
Quite frankly, I'm not ready for my husband to leave my presence, but, I know that he will not be hurting if he does go. I will be heartbroken, I will be more sad than I can even imagine being. But, my faith, is probably on more solid ground than it's ever been. I feel God's presence as much as I ever have.
I've watched the families in the ICU waiting rooms ... as they've not known what their loved one would want. They are try to make life and death decisions for someone who isn't awake, and they have no idea what that person feels about extended care, extensive machinery ... or quality of life issues. They have no peace, they have only confusion ...and they feel totally disconnected from their loved one.
Even when Don was at his worst, I knew that because we'd talked about it so often, we were in this together.
I beg of you, talk to your families and friends ... how do you feel about your care when the bleak comes. Talk about every imaginable situation. What kind of situation is ventilation ok in, when is it not. Is it ok for pneumonia? Is it ok to see if they can find improvement for a few days, then they need to turn it off if there is none? What are your wishes, talk about them ... talk about the details. And make sure that you're prepared for a new way of life if something happens.
Don't let the worst catch you in a state of confusion. It doesn't help things.
I feel like I've been pushed through a key hole and pulled out backwards this week and the one thing I don't feel, is confused. It's a matter of waiting to see how the circumstances unfold, and knowing we're in God's hands.
It's not fun. It's harder than I could ever have guessed. But we talked about it. You should too. You can't imagine the peace of mind it brings.
He will most likely have a brand new baseline in life. Oxygen full time, and most likely, walking again, isn't going to happen.
Questions are being shot at me right and left about what can the church do for me. What calls need to be made to Habitat to accomodate our house ...what do we need to do.
The answer is simple. Nothing.
While we were really not prepared for this to happen in reality, in practicality, we honestly did know it was going to happen. There is no step leading to our house. There is a ramp from the driveway to our door. The doorways are an inch wider than most ..and the bathtub has a bar. This house was built with the idea that one day, the post polio would become an issue for Don, and we did not want to have to modify the house at that time.
The decisions to be made about machines, and life sustaining are simply a matter of what amount of healing, restoration can we gain for his body. How much recovery can he get. The choices he's made, have long since been made, discussed, talked about till we were blue in the face. I could recite them on ambien. In the middle of chaos, I know exactly what his choices are ...and this weekend, I knew on the worst day, when he was crashing, and it was clear that things could go sour very fast, what choices might have to be made. We'd talked so often, and so thoroughly, there simply is no questions of 'what does he want?'
Our faith, is so solid, we feel the presence of God, strong ..and solid .. in the middle of this horrible storm, we know beyond a shadow of a doubt, that He is there ...and that we are in the palm of His hand.
Quite frankly, I'm not ready for my husband to leave my presence, but, I know that he will not be hurting if he does go. I will be heartbroken, I will be more sad than I can even imagine being. But, my faith, is probably on more solid ground than it's ever been. I feel God's presence as much as I ever have.
I've watched the families in the ICU waiting rooms ... as they've not known what their loved one would want. They are try to make life and death decisions for someone who isn't awake, and they have no idea what that person feels about extended care, extensive machinery ... or quality of life issues. They have no peace, they have only confusion ...and they feel totally disconnected from their loved one.
Even when Don was at his worst, I knew that because we'd talked about it so often, we were in this together.
I beg of you, talk to your families and friends ... how do you feel about your care when the bleak comes. Talk about every imaginable situation. What kind of situation is ventilation ok in, when is it not. Is it ok for pneumonia? Is it ok to see if they can find improvement for a few days, then they need to turn it off if there is none? What are your wishes, talk about them ... talk about the details. And make sure that you're prepared for a new way of life if something happens.
Don't let the worst catch you in a state of confusion. It doesn't help things.
I feel like I've been pushed through a key hole and pulled out backwards this week and the one thing I don't feel, is confused. It's a matter of waiting to see how the circumstances unfold, and knowing we're in God's hands.
It's not fun. It's harder than I could ever have guessed. But we talked about it. You should too. You can't imagine the peace of mind it brings.
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