Ugh. Few people know THAT knot. The knot that the parents of Ethan Powell have in the pit of their stomachs this evening. It feels literally like your heart is in your throat and you feel like you are holding your breath but then you realize you aren't.
You sit there in that room, doctors sit there with you. You all watch the monitors because you all know that there isn't one person in that room that can save that child right now. It's up to God and that baby at this moment. You watch the numbers and they mean so much, ever drift of a blood pressure every drift of a sat number means the world to you. You watch those numbers and when they start trending quickly in the wrong direction you see the doctors tense and the nurses look at them for instructions.
The monitor constantly sings it's scary song..... ding ding ding....ding ding..... over and over and over again no matter how many times they silence it. The blinking red numbers scream at you. Nothing else in the world exists. You don't hear the sounds of others talking, you don't hear the sounds of ventilators or the hustle and bustle in the hallways. You only hear the sound of that monitor and hang on to every word that is muttered from a doctor or nurses mouth..... listening, waiting for some indication that they know what's happening, for some clue.
You want to run away and hide and you want to run to your child and scoop them up and take them away from the invisible danger in the room. You can do none of those things. Helplessness takes over and you wish you could even cry but you can't. You are so far above, or maybe below any emotion.
The staff tries to comfort and inform you. You shake your head but don't really hear what they are saying......... the dinging of the monitor is so overwhelmingly loud and fills the entire room with it's terror. You sit there, the most insignificant person in the room yet the one with so much to lose. You are frozen in your seat as people glance your way, waiting for you to crumble. Yet they don't understand that you are so far beyond that, you are on autopilot. Time slows down, seconds become hours and that god forsaken dinging won't stop. You feel your heart pound and think it might just burst at any moment........
Maybe it gets better. Maybe with enough blood, enough medications, enough equipment they finally stabalize him. You walk to his bedside and hold him as much as you can, terrified to touch him, terrified to feel. You look at his battered body and, maybe selfishly, thank God for another chance. You push the thought from your mind as to what this constant turmoil is doing to him because the alternative is too much to bear. You kiss him and dust yourself off as doctors beging to put their chairs away and filter out of the room with a sigh of relief. But the knot never goes away, it stays in it's spot in your stomach, sometimes waning for a time only to be brought back up when it all starts over again.
You never know when that monitor is going to start, and you never know if this is the time they won't get it to stop. Your life hangs in the balance almost as much as your child's does, your very sanity dependant on what the next 30 seconds will mean. This is a ride you can't get off. A scary room you can't find the exit to. The walls close in on you.
Imagine living this every day. Imagine living this every hour. The rollercoaster ride from hell. Just imagine..... and you will understand why when it's finally over the relief is as welcomed as anything. The pain is there, but at least you know that this pain will be different, in some ways easier to bear in some ways more difficult. Because the rollercoaster, the teetering between life and death is now over and the decision has been made. Once again you kiss his tiny body, afraid to touch him, and exhale slowly as the knot, for the first time in a very long time........... fades away.
For years you continue to hear the sound of that monitor in your head, it wakes you from your dreams and sometimes prevents sleep from coming altogether. But now, you get to wake from the nightmare from time to time.
Please pray for Ethan tonight. Pray for him to be healed in whichever way God has planned for him. Comfort his parents and give them the strength to hold on and if the time comes, the strength to let go.....
Showing posts with label memories of the PICU. Show all posts
Showing posts with label memories of the PICU. Show all posts
Friday, April 4, 2008
Tuesday, September 4, 2007
When reality isn't
In a wierd way, i've spent the past almost 18 months in a sort of denial. To ask me I would have vehemently swore that I was not in denial, I was coping the best way I could. But I was/am.
I don't think i've ever taken the time to totally process. When Alex was born and got sick, those weeks were such a constant roller coaster. There was never any downtime to think. I never had the chance to really say "Ok, my child was born gravely ill, this is our reality"
After he died, we threw ourselves into things, we got pregnant with Nathan, again, never taking the time to process. To really accept that our child died.
Now that things are leveling out. I find myself realizing that my child was born, he was critically ill, and he died. HE DIED! I read stories of other kids who have died and I feel such a deep sympathy for thier families, it's like I don't realize sometimes that I am one of them.
I remember the Monday before Alex died, the day when the inate "knowing" took over and without being told, I knew he was going to die. I remember making the kids lunch and crying that whole day. Hailey asked what was wrong and I just blurted out "I think Alex is going to die"..... I felt SO bad about saying that, watching the tears well up in her eyes. Yes he had taken a turn for the worse but there had never been a time when anyone said to me "you know, Alex probably isn't going to pull through". I started to question myself. Why would I say that to her?! A child!
That afternoon at the hospital I talked to the child-family life specialist and I didn't tell him that I had told Hailey that, but he said something to me that made a ton of sense. He told me that the worst thing I could do is hide from my kids. They KNOW when something is going on without being told and if you don't say anything, they get scared and upset. If you say it, then at least they know what's going on. You see, kids have a great way of making other people's problems about them. Not that they are selfish, they just always think that if an adult is upset it's somehow thier fault. So by saying what I said, Hailey knew that I was upset about Alex, and it wasn't her fault.
This grieving process. It's hard to get a handle on. There is no right or wrong way to do it and that makes it extremely difficult to know if the things I do, my coping mechanisms, are they normal or abnormal? Am I grieving in a "healthy" way, or not?
I suppose I'm greiving in my way. And that makes it the right way. I just wish someone would come along and tell me how I can put this behind me....how I can understand.
He's been on my mind a lot more than usual lately. It struck me odd the other day when I saw a kid who had a feeding tube and the mom was tending to his needs. I got sad and thought how I wish I had the opportunity. Who WISHES for a sick child? It's so strange, like I was robbed of being mom to an Alex who would have been normal and healthy, but then I was robbed of an Alex who was sick and needed such indepth care. I had prepared myself for spending the rest of my life tending to his needs with medications, doctor visits, surgeries, procedures. And I'm grieving THAT too. I guess anything you prepare for and dont' get is a loss.....
I don't think i've ever taken the time to totally process. When Alex was born and got sick, those weeks were such a constant roller coaster. There was never any downtime to think. I never had the chance to really say "Ok, my child was born gravely ill, this is our reality"
After he died, we threw ourselves into things, we got pregnant with Nathan, again, never taking the time to process. To really accept that our child died.
Now that things are leveling out. I find myself realizing that my child was born, he was critically ill, and he died. HE DIED! I read stories of other kids who have died and I feel such a deep sympathy for thier families, it's like I don't realize sometimes that I am one of them.
I remember the Monday before Alex died, the day when the inate "knowing" took over and without being told, I knew he was going to die. I remember making the kids lunch and crying that whole day. Hailey asked what was wrong and I just blurted out "I think Alex is going to die"..... I felt SO bad about saying that, watching the tears well up in her eyes. Yes he had taken a turn for the worse but there had never been a time when anyone said to me "you know, Alex probably isn't going to pull through". I started to question myself. Why would I say that to her?! A child!
That afternoon at the hospital I talked to the child-family life specialist and I didn't tell him that I had told Hailey that, but he said something to me that made a ton of sense. He told me that the worst thing I could do is hide from my kids. They KNOW when something is going on without being told and if you don't say anything, they get scared and upset. If you say it, then at least they know what's going on. You see, kids have a great way of making other people's problems about them. Not that they are selfish, they just always think that if an adult is upset it's somehow thier fault. So by saying what I said, Hailey knew that I was upset about Alex, and it wasn't her fault.
This grieving process. It's hard to get a handle on. There is no right or wrong way to do it and that makes it extremely difficult to know if the things I do, my coping mechanisms, are they normal or abnormal? Am I grieving in a "healthy" way, or not?
I suppose I'm greiving in my way. And that makes it the right way. I just wish someone would come along and tell me how I can put this behind me....how I can understand.
He's been on my mind a lot more than usual lately. It struck me odd the other day when I saw a kid who had a feeding tube and the mom was tending to his needs. I got sad and thought how I wish I had the opportunity. Who WISHES for a sick child? It's so strange, like I was robbed of being mom to an Alex who would have been normal and healthy, but then I was robbed of an Alex who was sick and needed such indepth care. I had prepared myself for spending the rest of my life tending to his needs with medications, doctor visits, surgeries, procedures. And I'm grieving THAT too. I guess anything you prepare for and dont' get is a loss.....
Tuesday, June 26, 2007
Every mother's nightmare
Every mother pushes the thought from her mind. The thought that something could happen to her child. It wakes us from our sleep, we think we would fail to survive it.
Some of us have for whatever reason have to live it. Somehow we do survive it but how much of our soul is still intact isn't always certain.
It started with the vasectomy, kind of strange isn't it? Then the reversal. Then by the grace of God the positive pregnancy test. An uneventful pregnancy, perfect in every aspect until at 36 weeks my water broke.
He was born in January 2006 at 2:32am. A petite 4 lbs 14 oz. The next 16 hours were pure exhausted bliss. Until he stopped breathing...
That night we heard the dreaded words that would change our lives. Heart defect. We traveled to one hospital to stabalize him, then another to fix him.
We lived in a Ronald Mcdonald house for over 6 weeks.
Our lives turned on it's nose. Normal became a thing of the past. Our lives were dictated by every breath of a ventilator, every blood test, every ultrasound, CT scan. They say it's a roller coaster. It is. Imagine that feeling as you are going up the track.... the anticipation. Then imagine going over the hill to the first big drop. The track could well derail and hit the ground.... or it could be fine and climb another hill only to drop again. There is no certainty. So many days and nights I would sit in his room, 3 or 4 chairs aligned in a row with doctors and me just sitting there with baited breath waiting for Alex to show us all what to do next.
Alex showed us strength far beyond anyone's comprehention. So many times he pulled through from deaths door. He taught us to live in the moment, because you never know what the next may bring.
Alex showed us patience. He endured so much to stay with us until the moment we were strong enough to live without him.
The day he died changed my already changed world. My children now knew that children die. My husband and I now completely understood the uncertainty and precariousness of life. We learned to take each day as the gift that it is and never let one day go by where you are not happy with the way you lived it. It might be your last.
The day we put his tiny body in the ground made me realize that in an instant, life is over. It's that quick. You live, you die, you are put in the ground, and people walk away. All that really matters is what you do between the day you are born and the day you die. How many lives you touch, how many lives you make better in some tiny way.
So, from that day forward, I have tried and will continue to try to make each day count. I will try to live without regret. I will try to teach others the lessons that my son taught me. I learned more in 6 weeks than I will teach in a lifetime.
Friday, March 16, 2007
That day
I always thought that today, the first anniversary of Alex's death that I'd have something extremely profound to post here. I don't. So I'd like to just remember for a moment. Remember a day that will be hard for me to remember and hard for you to read.
I knew. I knew days before. I don't know how I knew but I did. I talked to my friend Brandy on Monday about it. I kept telling myself that I was being stupid, he'd be fine.
I saw so many other babies get better. I saw their chests closed, I saw thier mothers hold them.
I felt the need for the other kids to come and see Alex. That didn't happen because they got sick. I so badly now wish they had.
That day, that phone call. Hearing those words "Alexander has taken a turn for the worse, please come" I knew then. There's something strangly frightening in those things you know without being told.
I ran. I ran through the snow until I couldn't breathe. I ran some more. I ran into the hospital and waited for an eternity for those stupid elevators. I ran through the halls....... I wanted to run the other way. I got to the unit and I took the back way to his room, subconciousely I knew if I ran past the desk someone would try to stop me. I needed to go in there, I needed to see.
I ran into the room and saw 2 of our doctors standing on either side of Craig. I'm not sure if the room was silent or if I just wasn't hearing the chaos that was going on, I don't remember hearing anything. It must have been loud though because I had to holler Craig's name 3 or 4 times before one of the doctors heard me, I was standing right next to him.
I didn't look at Alex's bed. I asked if he was coding and was told yes. I had always envisioned breaking down hearing words like that, I was running on pure adrenaline I guess because I was very matter of fact about it.
They wanted more tests. We all knew it was futile. I'm glad we did those tests though.
We go back into Alex's room. The nurse is doing chest compressions. I look down at his little body and see his chest ripped back open. I can see the metal clips holding his sternum together. The mama bear in me took over, stop hurting him! I looked at the nurses teary face and told her to stop, she looked at the dr who nodded his head and lifted her hands off his chest. I kissed Alex and told him I loved him, so did Craig. He was already gone, his soul was gone to heaven long ago. Someone turned the monitor off. That monitor had been my lifeline for so long, my information station. The only real consistant thing I had, that was probably the most real thing, seeing that monitor go black.
I sat down and she put Alex in my arms. The most primal emotions took over and I cried like I have never before in my life. I wailed, I couldn't breathe. So many thoughts filled my head and then were replaced by new and sometimes conflicting ones in seconds. I was strangely relieved. I kept saying in my head "it's over, it's finally over" and then guilt for thinking that would come. For once his peace didn't come from a medicine pump, his chest didn't forcefully move up and down in the unnatural way a ventilator breathes. He was at peace, for the first time ever.
they asked if we wanted a private room. I couldn't bear to move from HIS space. I felt like if we moved then that started the change and I wasn't ready for the change just yet. I needed to do it slowly, one step at a time.
Telling the kids was excrutiating. Watching their hearts break in two. Watching them hold his tiny body. Shaylin's words "momma he's cold" will ring in my head forever and ever.
I wanted to stay forever and hold him but I coudln't. The physical changes were setting in and I didn't want to remember him that way. I said goodbye and laid him on the bed that he had laid on for the past 6 weeks, in his little blue pajamas and hat, the only clothes he'd ever worn. I turned around and walked away. I walked away from him. I had always refused to leave the cities without him, and now I had to.
I left a peice of my soul there too.
I knew. I knew days before. I don't know how I knew but I did. I talked to my friend Brandy on Monday about it. I kept telling myself that I was being stupid, he'd be fine.
I saw so many other babies get better. I saw their chests closed, I saw thier mothers hold them.
I felt the need for the other kids to come and see Alex. That didn't happen because they got sick. I so badly now wish they had.
That day, that phone call. Hearing those words "Alexander has taken a turn for the worse, please come" I knew then. There's something strangly frightening in those things you know without being told.
I ran. I ran through the snow until I couldn't breathe. I ran some more. I ran into the hospital and waited for an eternity for those stupid elevators. I ran through the halls....... I wanted to run the other way. I got to the unit and I took the back way to his room, subconciousely I knew if I ran past the desk someone would try to stop me. I needed to go in there, I needed to see.
I ran into the room and saw 2 of our doctors standing on either side of Craig. I'm not sure if the room was silent or if I just wasn't hearing the chaos that was going on, I don't remember hearing anything. It must have been loud though because I had to holler Craig's name 3 or 4 times before one of the doctors heard me, I was standing right next to him.
I didn't look at Alex's bed. I asked if he was coding and was told yes. I had always envisioned breaking down hearing words like that, I was running on pure adrenaline I guess because I was very matter of fact about it.
They wanted more tests. We all knew it was futile. I'm glad we did those tests though.
We go back into Alex's room. The nurse is doing chest compressions. I look down at his little body and see his chest ripped back open. I can see the metal clips holding his sternum together. The mama bear in me took over, stop hurting him! I looked at the nurses teary face and told her to stop, she looked at the dr who nodded his head and lifted her hands off his chest. I kissed Alex and told him I loved him, so did Craig. He was already gone, his soul was gone to heaven long ago. Someone turned the monitor off. That monitor had been my lifeline for so long, my information station. The only real consistant thing I had, that was probably the most real thing, seeing that monitor go black.
I sat down and she put Alex in my arms. The most primal emotions took over and I cried like I have never before in my life. I wailed, I couldn't breathe. So many thoughts filled my head and then were replaced by new and sometimes conflicting ones in seconds. I was strangely relieved. I kept saying in my head "it's over, it's finally over" and then guilt for thinking that would come. For once his peace didn't come from a medicine pump, his chest didn't forcefully move up and down in the unnatural way a ventilator breathes. He was at peace, for the first time ever.
they asked if we wanted a private room. I couldn't bear to move from HIS space. I felt like if we moved then that started the change and I wasn't ready for the change just yet. I needed to do it slowly, one step at a time.
Telling the kids was excrutiating. Watching their hearts break in two. Watching them hold his tiny body. Shaylin's words "momma he's cold" will ring in my head forever and ever.
I wanted to stay forever and hold him but I coudln't. The physical changes were setting in and I didn't want to remember him that way. I said goodbye and laid him on the bed that he had laid on for the past 6 weeks, in his little blue pajamas and hat, the only clothes he'd ever worn. I turned around and walked away. I walked away from him. I had always refused to leave the cities without him, and now I had to.
I left a peice of my soul there too.
Sunday, June 25, 2006
The blame game
I'm finding myself asking some hard questions today, questions that I don't have the answers for. Questions that I'm not sure I WANT to answers to.
Did my baby die because of someone's mistake? I'm sure every bereaved parent asks this. You want to blame somebody, you want it to be someone's fault so you have a place to direct your hurt and anger. But...
Last night I had a dream. I dreamt I was walking in a beautiful field full of daisies and in the distance I saw a red haired little boy, no bigger than the tallest flower running. I ran to him to realize that I was standing face to face with my son. I scooped him up in my arms and cried the tears that have been dormant for so long. I asked him if he was happy and he said he is. I asked him if there was anything we could have done to save him and he said that Craig and I had done everything we could have, but that he had planned to stay until he had his bleeding problem. After that he got sicker and finally God asked him if he wanted to go home and he said he couldn't stand the pain anymore and went.
I know it was a dream. But did the heparing "incident" kill my child? He was doing so well before that, SO well. Sure he had his complications, but he really was improving. Did someone KILL my child? I have the surgical report from that incident, it doesn't jump out at you, was it correct?
That dream really upset me. I has knocked down my resolve. I always just convinced myself that he wasn't meant to be here, from the start God had planned to take him back. But what if that wasn't the case? What if he would still be here if someone hadn't screwed up and given him too much heparin. I still don't know the specifics on that, it was all very hush hush and I still remember that evening was the ONLY time, in 6.5 weeks that I had EVER been asked to leave the room during nursing shift change. What were they hiding?
In the days that followed that I heard tiny bits at shift changes and what not....... I heard "heparin incident" "got too much heparin". At the time Craig and I, we were too scared to ask. We had no options for Alex at that point besides right where he was at. We had to keep our faith. I even admit I went so far as to tell people things that weren't true about the situation being investigated when it wasn't. Part of that was probably because of my own guilt, I felt a duty to look into it, but I couldn't stand to know. It's something you can't understand unless you are there, your child laying in that bed with nowhere else to go. You just have hang on to any thread that it might have not happened the way it appears.
I guess a case could be made that he DID live that night. With a lot of hard work from the docs and nurses he DID live. But did he? That morning everything worked, after that, he never peed again. I remember Dr D telling me that night "if he hadn't bled, I think we could have gotten him closed, so we want to try again asap" but after that, he was just too weak to withstand it. So if that hadn't happened would he have been closed? If he had been closed would he have gotten septic? I don't know what to do. I want to know the answers, I want honesty....... but if no one could be forthright with me before, why would they now? I'm angry. Why didn't anyone just come to us and say "this happened, were sorry?" Because we aren't lawsuit happy people, you know what we would have said? "humans make mistakes, thank you for being honest". But they weren't honest. That's what makes me angry. I think someone may have made a horrible mistake and no one had the decency to tell us.
Did my baby die because of someone's mistake? I'm sure every bereaved parent asks this. You want to blame somebody, you want it to be someone's fault so you have a place to direct your hurt and anger. But...
Last night I had a dream. I dreamt I was walking in a beautiful field full of daisies and in the distance I saw a red haired little boy, no bigger than the tallest flower running. I ran to him to realize that I was standing face to face with my son. I scooped him up in my arms and cried the tears that have been dormant for so long. I asked him if he was happy and he said he is. I asked him if there was anything we could have done to save him and he said that Craig and I had done everything we could have, but that he had planned to stay until he had his bleeding problem. After that he got sicker and finally God asked him if he wanted to go home and he said he couldn't stand the pain anymore and went.
I know it was a dream. But did the heparing "incident" kill my child? He was doing so well before that, SO well. Sure he had his complications, but he really was improving. Did someone KILL my child? I have the surgical report from that incident, it doesn't jump out at you, was it correct?
That dream really upset me. I has knocked down my resolve. I always just convinced myself that he wasn't meant to be here, from the start God had planned to take him back. But what if that wasn't the case? What if he would still be here if someone hadn't screwed up and given him too much heparin. I still don't know the specifics on that, it was all very hush hush and I still remember that evening was the ONLY time, in 6.5 weeks that I had EVER been asked to leave the room during nursing shift change. What were they hiding?
In the days that followed that I heard tiny bits at shift changes and what not....... I heard "heparin incident" "got too much heparin". At the time Craig and I, we were too scared to ask. We had no options for Alex at that point besides right where he was at. We had to keep our faith. I even admit I went so far as to tell people things that weren't true about the situation being investigated when it wasn't. Part of that was probably because of my own guilt, I felt a duty to look into it, but I couldn't stand to know. It's something you can't understand unless you are there, your child laying in that bed with nowhere else to go. You just have hang on to any thread that it might have not happened the way it appears.
I guess a case could be made that he DID live that night. With a lot of hard work from the docs and nurses he DID live. But did he? That morning everything worked, after that, he never peed again. I remember Dr D telling me that night "if he hadn't bled, I think we could have gotten him closed, so we want to try again asap" but after that, he was just too weak to withstand it. So if that hadn't happened would he have been closed? If he had been closed would he have gotten septic? I don't know what to do. I want to know the answers, I want honesty....... but if no one could be forthright with me before, why would they now? I'm angry. Why didn't anyone just come to us and say "this happened, were sorry?" Because we aren't lawsuit happy people, you know what we would have said? "humans make mistakes, thank you for being honest". But they weren't honest. That's what makes me angry. I think someone may have made a horrible mistake and no one had the decency to tell us.
The blame game
I'm finding myself asking some hard questions today, questions that I don't have the answers for. Questions that I'm not sure I WANT to answers to.
Did my baby die because of someone's mistake? I'm sure every bereaved parent asks this. You want to blame somebody, you want it to be someone's fault so you have a place to direct your hurt and anger. But...
Last night I had a dream. I dreamt I was walking in a beautiful field full of daisies and in the distance I saw a red haired little boy, no bigger than the tallest flower running. I ran to him to realize that I was standing face to face with my son. I scooped him up in my arms and cried the tears that have been dormant for so long. I asked him if he was happy and he said he is. I asked him if there was anything we could have done to save him and he said that Craig and I had done everything we could have, but that he had planned to stay until he had his bleeding problem. After that he got sicker and finally God asked him if he wanted to go home and he said he couldn't stand the pain anymore and went.
I know it was a dream. But did the heparing "incident" kill my child? He was doing so well before that, SO well. Sure he had his complications, but he really was improving. Did someone KILL my child? I have the surgical report from that incident, it doesn't jump out at you, was it correct?
That dream really upset me. I has knocked down my resolve. I always just convinced myself that he wasn't meant to be here, from the start God had planned to take him back. But what if that wasn't the case? What if he would still be here if someone hadn't screwed up and given him too much heparin. I still don't know the specifics on that, it was all very hush hush and I still remember that evening was the ONLY time, in 6.5 weeks that I had EVER been asked to leave the room during nursing shift change. What were they hiding?
In the days that followed that I heard tiny bits at shift changes and what not....... I heard "heparin incident" "got too much heparin". At the time Craig and I, we were too scared to ask. We had no options for Alex at that point besides right where he was at. We had to keep our faith. I even admit I went so far as to tell people things that weren't true about the situation being investigated when it wasn't. Part of that was probably because of my own guilt, I felt a duty to look into it, but I couldn't stand to know. It's something you can't understand unless you are there, your child laying in that bed with nowhere else to go. You just have hang on to any thread that it might have not happened the way it appears.
I guess a case could be made that he DID live that night. With a lot of hard work from the docs and nurses he DID live. But did he? That morning everything worked, after that, he never peed again. I remember Dr D telling me that night "if he hadn't bled, I think we could have gotten him closed, so we want to try again asap" but after that, he was just too weak to withstand it. So if that hadn't happened would he have been closed? If he had been closed would he have gotten septic? I don't know what to do. I want to know the answers, I want honesty....... but if no one could be forthright with me before, why would they now? I'm angry. Why didn't anyone just come to us and say "this happened, were sorry?" Because we aren't lawsuit happy people, you know what we would have said? "humans make mistakes, thank you for being honest". But they weren't honest. That's what makes me angry. I think someone may have made a horrible mistake and no one had the decency to tell us.
Did my baby die because of someone's mistake? I'm sure every bereaved parent asks this. You want to blame somebody, you want it to be someone's fault so you have a place to direct your hurt and anger. But...
Last night I had a dream. I dreamt I was walking in a beautiful field full of daisies and in the distance I saw a red haired little boy, no bigger than the tallest flower running. I ran to him to realize that I was standing face to face with my son. I scooped him up in my arms and cried the tears that have been dormant for so long. I asked him if he was happy and he said he is. I asked him if there was anything we could have done to save him and he said that Craig and I had done everything we could have, but that he had planned to stay until he had his bleeding problem. After that he got sicker and finally God asked him if he wanted to go home and he said he couldn't stand the pain anymore and went.
I know it was a dream. But did the heparing "incident" kill my child? He was doing so well before that, SO well. Sure he had his complications, but he really was improving. Did someone KILL my child? I have the surgical report from that incident, it doesn't jump out at you, was it correct?
That dream really upset me. I has knocked down my resolve. I always just convinced myself that he wasn't meant to be here, from the start God had planned to take him back. But what if that wasn't the case? What if he would still be here if someone hadn't screwed up and given him too much heparin. I still don't know the specifics on that, it was all very hush hush and I still remember that evening was the ONLY time, in 6.5 weeks that I had EVER been asked to leave the room during nursing shift change. What were they hiding?
In the days that followed that I heard tiny bits at shift changes and what not....... I heard "heparin incident" "got too much heparin". At the time Craig and I, we were too scared to ask. We had no options for Alex at that point besides right where he was at. We had to keep our faith. I even admit I went so far as to tell people things that weren't true about the situation being investigated when it wasn't. Part of that was probably because of my own guilt, I felt a duty to look into it, but I couldn't stand to know. It's something you can't understand unless you are there, your child laying in that bed with nowhere else to go. You just have hang on to any thread that it might have not happened the way it appears.
I guess a case could be made that he DID live that night. With a lot of hard work from the docs and nurses he DID live. But did he? That morning everything worked, after that, he never peed again. I remember Dr D telling me that night "if he hadn't bled, I think we could have gotten him closed, so we want to try again asap" but after that, he was just too weak to withstand it. So if that hadn't happened would he have been closed? If he had been closed would he have gotten septic? I don't know what to do. I want to know the answers, I want honesty....... but if no one could be forthright with me before, why would they now? I'm angry. Why didn't anyone just come to us and say "this happened, were sorry?" Because we aren't lawsuit happy people, you know what we would have said? "humans make mistakes, thank you for being honest". But they weren't honest. That's what makes me angry. I think someone may have made a horrible mistake and no one had the decency to tell us.
Monday, June 19, 2006
Dads hurt too
Once again I need to ask for your prayers. This time for a little sweet girl named Ashley who also has a special heart.
Ashley is in the PICU and so much of what she is going through we lived through with Alex. She's in rough shape, transplant seems to be her only option but she's too sick for ECMO support until a heart becomes available. Please pray for this family that thier miracle comes in the form of healing for this sweet little girl.
Yesterday was fathers day. I can't really say how Craig did with it because for the first time in quite a few years, he worked on father's day. He was kind of distant in the morning and left for work early and I imagine he did that to stop by the cemetary before work. A lot of you get to listen to my ramblings, but don't get to know much about my dear sweet husband unless you know him personally. He's such a great husband and father and my heart hurts for him. I wish I could just take his pain away and I can't. He's doing much better that's for sure and I am confident he's on the right road to healing. I just wish he didn't have to hurt.
Ashley is in the PICU and so much of what she is going through we lived through with Alex. She's in rough shape, transplant seems to be her only option but she's too sick for ECMO support until a heart becomes available. Please pray for this family that thier miracle comes in the form of healing for this sweet little girl.
Yesterday was fathers day. I can't really say how Craig did with it because for the first time in quite a few years, he worked on father's day. He was kind of distant in the morning and left for work early and I imagine he did that to stop by the cemetary before work. A lot of you get to listen to my ramblings, but don't get to know much about my dear sweet husband unless you know him personally. He's such a great husband and father and my heart hurts for him. I wish I could just take his pain away and I can't. He's doing much better that's for sure and I am confident he's on the right road to healing. I just wish he didn't have to hurt.
Tuesday, June 13, 2006
Slipping
So I didn't go to Tyler's funeral on Saturday. I won't elaborate.
I'm really glad that I got pregnant again so soon. I find myself being able to see babies again without being so sad, I almost ALMOST was able to go into the infant department at walmart today........ big step.
I have however been feeling a little guilty. I look at Alex's picture on my computer desktop and I just search his little face and try to remember him........ my memories are so hazy and I hate it. I can't remember anymore his smell, I can barely remember what his fuzzy hair felt like. I vaguely remember the way he scrunched his face up during his silent cries. I find myself angry about that. If I can't have my baby why can't I have my memories at least? Why do I have to lose those too? Sometimes I look through the photo album at the pictures of him and I can remember the day, but I can't remember that moment the picture was taken. I can't remember how it felt to hold him. It's frustrating.
I'm really glad that I got pregnant again so soon. I find myself being able to see babies again without being so sad, I almost ALMOST was able to go into the infant department at walmart today........ big step.
I have however been feeling a little guilty. I look at Alex's picture on my computer desktop and I just search his little face and try to remember him........ my memories are so hazy and I hate it. I can't remember anymore his smell, I can barely remember what his fuzzy hair felt like. I vaguely remember the way he scrunched his face up during his silent cries. I find myself angry about that. If I can't have my baby why can't I have my memories at least? Why do I have to lose those too? Sometimes I look through the photo album at the pictures of him and I can remember the day, but I can't remember that moment the picture was taken. I can't remember how it felt to hold him. It's frustrating.
Saturday, May 20, 2006
The elevator story
So, I said i'd be sharing stories of our adventure and here's one that I am remembering today.
The Elevator incident.
When we first got to the U of MN we noticed that the elevators tended to be a little quirky. Sometimes they wouldn't recognize that the door was shut and you'd have to jump to get it to shut enough and go (yeah, and what'd they do with that 4 million donation from the Vikings?) And Craig and I joked that one day, one of us was going to get stuck in one. My biggest fear.
Fast forward about 4 weeks. Craig was at home working for the weekend. Tyler's mom and I decided to go up to the 8th floor (yes, that hospital is backwards, the cafeteria is on the top instead of the basement) and have some dinner. We have our 'is this really meat?' cheeseburgers and headed back down to the 5th floor.
The elevator stopped on the 6th floor to allow more passengers on. An elderly woman, her daughter who had previousely had a stroke and was in a wheelchair, and 2 other seemingly fairly healthy daughters. Along with another woman who was traveling alone. While they were getting on the door was goofy and was trying to shut on them. Wierd
So they get in, the door is finally allowed to close and..........nothing happens. All the buttons go dim, and instead of the little LED thing saying what floor we were on it instead said ---.
We all sat there for a minute just waiting and processing what was happening. After pushing all of the buttons and nothing happening to our dear dead elevator we called for help.
The nice security guard comes and from outside the door we hear him say in very broken english something about resetting the system. A few minutes later we feel ourselves move, we thought we were going up (except for the lady in the corner who insisted we were falling to our death), but the doors didn't open.
The broken english security man said he was going to call maintenence. He told us to back up as he was going to try to shove something in the door to 'get us some air' (as if elevators are air tight or something). Then inquired as to if we would like him to try to get us some magazines. About this point is where I succumbed to the unrestrainable urge to laugh hysterically and yelled that the magazines wouldn't be necessary, but a margarita would be quite nice.
A few minutes later the maintenence gentleman comes and tells us he is going to reset the system (didn't we already try that?) Nothing happens.
By this time we had been in our close quarters for approximately 30 minutes. They informed us that thier meneuvers hadn't worked (oh, really?) and they were calling the elevator company. A few minutes latery they informed us that they man from the elevator company would be there in 20 minutes, as he was coming from across town.
I offered my phone to the other unfortunate souls in the elevator so they could call anyone they needed to call. (my phone worked so nicely in MPLS, sigh) and when they were finished I called Craig at work.
Me: You'll never guess where I am
Craig: Jail? (WHAT?!?!)
ME: errrr. no. stuck in the elevator at the hospital
Craig: LMAO
Well, not exactly the response I was after. So I call Alex's nurse and tell her where I am, she too found it rather amusing but was kind enough to inquire as to whether or not I was ok.
I'm still trying to repress my laughter, thinking 'yep, THIS is my life!' When the elderly woman sits down on the floor, begins hyperventilating and promptly insists that we were all going to die, she had it all figured out. We were going to crash to our deaths'
The rest of us are trying to calm her down, lest the poor soul go into cardiac arrest on us. She did regain her composure after a few minutes and everyone in the elevator breathed a sigh of relief that we were not, in fact, going to have to preform life saving measures in the elevator.
A bit later we heard someone from outside tell us to stand back. It was like something in a movie and I pictured they were going to try to blow the door up with dynamite or something, they were quite dramatic.
Then this big buy prys the doors open in some heroic effort akin to a superman move. We all stepped out and strange lady in the corner proceeded to hug everyone, apparently going through such a 'traumatic' experience showed her the love.
Someone from the hospital took our names and addresses. I guess to prepare thier legal defense if any of us decided we were going to sue for pain and suffering or something and gave us all $4.50 meal vouchers for the cafeteria. Apparently we HAD actually gone up when we thought, because we were now back on the 8th floor.
A few of the folks then refused to enter another elevator and took the stairs down. Myself, thinking that 8 floors down was a bit ambitious (was going down to smoke) decided to get in another elevator. The nice security fellow demanded he ride with me, apparently he was afraid I'd break another elevator.
The Elevator incident.
When we first got to the U of MN we noticed that the elevators tended to be a little quirky. Sometimes they wouldn't recognize that the door was shut and you'd have to jump to get it to shut enough and go (yeah, and what'd they do with that 4 million donation from the Vikings?) And Craig and I joked that one day, one of us was going to get stuck in one. My biggest fear.
Fast forward about 4 weeks. Craig was at home working for the weekend. Tyler's mom and I decided to go up to the 8th floor (yes, that hospital is backwards, the cafeteria is on the top instead of the basement) and have some dinner. We have our 'is this really meat?' cheeseburgers and headed back down to the 5th floor.
The elevator stopped on the 6th floor to allow more passengers on. An elderly woman, her daughter who had previousely had a stroke and was in a wheelchair, and 2 other seemingly fairly healthy daughters. Along with another woman who was traveling alone. While they were getting on the door was goofy and was trying to shut on them. Wierd
So they get in, the door is finally allowed to close and..........nothing happens. All the buttons go dim, and instead of the little LED thing saying what floor we were on it instead said ---.
We all sat there for a minute just waiting and processing what was happening. After pushing all of the buttons and nothing happening to our dear dead elevator we called for help.
The nice security guard comes and from outside the door we hear him say in very broken english something about resetting the system. A few minutes later we feel ourselves move, we thought we were going up (except for the lady in the corner who insisted we were falling to our death), but the doors didn't open.
The broken english security man said he was going to call maintenence. He told us to back up as he was going to try to shove something in the door to 'get us some air' (as if elevators are air tight or something). Then inquired as to if we would like him to try to get us some magazines. About this point is where I succumbed to the unrestrainable urge to laugh hysterically and yelled that the magazines wouldn't be necessary, but a margarita would be quite nice.
A few minutes later the maintenence gentleman comes and tells us he is going to reset the system (didn't we already try that?) Nothing happens.
By this time we had been in our close quarters for approximately 30 minutes. They informed us that thier meneuvers hadn't worked (oh, really?) and they were calling the elevator company. A few minutes latery they informed us that they man from the elevator company would be there in 20 minutes, as he was coming from across town.
I offered my phone to the other unfortunate souls in the elevator so they could call anyone they needed to call. (my phone worked so nicely in MPLS, sigh) and when they were finished I called Craig at work.
Me: You'll never guess where I am
Craig: Jail? (WHAT?!?!)
ME: errrr. no. stuck in the elevator at the hospital
Craig: LMAO
Well, not exactly the response I was after. So I call Alex's nurse and tell her where I am, she too found it rather amusing but was kind enough to inquire as to whether or not I was ok.
I'm still trying to repress my laughter, thinking 'yep, THIS is my life!' When the elderly woman sits down on the floor, begins hyperventilating and promptly insists that we were all going to die, she had it all figured out. We were going to crash to our deaths'
The rest of us are trying to calm her down, lest the poor soul go into cardiac arrest on us. She did regain her composure after a few minutes and everyone in the elevator breathed a sigh of relief that we were not, in fact, going to have to preform life saving measures in the elevator.
A bit later we heard someone from outside tell us to stand back. It was like something in a movie and I pictured they were going to try to blow the door up with dynamite or something, they were quite dramatic.
Then this big buy prys the doors open in some heroic effort akin to a superman move. We all stepped out and strange lady in the corner proceeded to hug everyone, apparently going through such a 'traumatic' experience showed her the love.
Someone from the hospital took our names and addresses. I guess to prepare thier legal defense if any of us decided we were going to sue for pain and suffering or something and gave us all $4.50 meal vouchers for the cafeteria. Apparently we HAD actually gone up when we thought, because we were now back on the 8th floor.
A few of the folks then refused to enter another elevator and took the stairs down. Myself, thinking that 8 floors down was a bit ambitious (was going down to smoke) decided to get in another elevator. The nice security fellow demanded he ride with me, apparently he was afraid I'd break another elevator.
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