As I have heard narrated on Grey's Anatomy enough times, surgeons are a breed all their own.
Parker's surgery this afternoon only took about an hour because they didn't transfer him to an operating room (too dangerous in his present state), they transferred the operating room to him. They had to crank the ventilator back up so it was breathing for him, and put him under general anesthesia for the third time in five days. The doctor re-opened the abdomen and cleaned everything out really well, then placed a piece of mesh inside him to keep everything pulled together. He believes he will not have to do this again, that on down the road he will only have to use sedation and pain meds to change the sponge that is placed in his flesh.
The reason I say they are a breed all their own is because whenever these surgeons talk about what they have done, or what they are going to do, their faces light up. Dr. Garcia is no exception. His face lit up like Santa Claus when he came to report back after it was over. Precisely, he got to put his hand and half his forearm up into Parker's abdominal cavity to really squeeze everything and clean it out super well.
If I had eaten anything today it would have come up instantly.
He said he was very pleased at how everything looked. The infection is still draining from the cyst into a tube that comes out his right side, but other than that, his insides looked healthy. I was a little confused by that .... if he's so frigging healthy why is he so sick???
They had to give him his fifth thing of blood today, too. No one is quite sure where the blood is disappearing to and why he continues to become anemic, so they keep giving him more and more units. I'm glad we are not in the late 80's. But I'm not sure why no one is jumping on that part of this.
I asked if the ventilator was causing him so much anxiety, why didn't they put him further under sedation. Doctor said there are reasons you don't want him on the ventilator and under that much sedation for too long and if at all possible they want to get him off it. They will try to wean him from it again this evening or tomorrow morning in the hopes that by Monday they can get the tube out.
Other than to know he is going to live, I want nothing more right now than to get that ventilator out of him. If it stays in too long they will have to put in a trach tube (I know that's spelled wrong, I'm too tired to look it up and you know what i mean). But it is causing him so much anxiety.
Parker's Dad has to leave tomorrow. I want to be sure Parker knows John is here before he leaves, it is so important to Parker's recovery to know he has been here by his side. James will stay with me until Parker is out of Critical Care (thinking POSITIVE!)
Tonight I will go to the little room at the Seton League House to sleep. His nurse will be Audra, who is calm and serene and I know will help Parker rest through the night. And once John leaves it will be harder for me to leave for a whole night. We will keep the room so I have a place to shower and do laundry and get naps.
A little note was slipped under the door of the room at Seton League House today. Thank you to two of my favorite families on earth. I'm sorry I will miss our annual favorite party in May, but I want you to know I was so touched by your thoughtfulness.
Saturday, April 18, 2009
Surgery #3
I saw a young woman standing in the doorway to this ICU waiting room where I spend most of every day. She was holding a little boy, a beautiful little boy, who looked to be about 10 months old. As she rocked her body back and forth very gently, he lay his head on her shoulder and smiled as he fell asleep. I wished I could hold Parker like that, and comfort him like I could when he was a baby.
He is heading back into surgery right now. This is surgery #3. The surgeon has to go in and put a piece of mesh in place of his muscle wall, mesh that will eventually be absorbed by his body. But because he is working so hard to reject the breathing tube, everytime he coughs he tears the abdominal wall a little more where it is laying open. Hopefully this will be the last one.
I feel so weary, but not anywhere near as I imagine he feels.
God grant me the serenity
To accept the things I cannot change,
The courage to change the things I can,
And the wisdom to know the difference.
He is heading back into surgery right now. This is surgery #3. The surgeon has to go in and put a piece of mesh in place of his muscle wall, mesh that will eventually be absorbed by his body. But because he is working so hard to reject the breathing tube, everytime he coughs he tears the abdominal wall a little more where it is laying open. Hopefully this will be the last one.
I feel so weary, but not anywhere near as I imagine he feels.
God grant me the serenity
To accept the things I cannot change,
The courage to change the things I can,
And the wisdom to know the difference.
Your Pain Is My Pain, Parker
I went to see Parker at 6:am after another night spent sleeping in the chair in the waiting room. During the night he'd had another episode of anxiety, got his hand on the tube on the left side of his body and started to pull it out. Audra said that episode was out of the blue.
While I was there the respitory therapist came to try and adjust the setting on his ventilator. He had bitten the brace thing off again, the piece that keeps him from biting down on the breathing tube, so they put a larger one in this time. He started coughing, and the look on his face told me he was in pain as his abdomen tightened with each spasm.
If I could only take his place.
While I was there the respitory therapist came to try and adjust the setting on his ventilator. He had bitten the brace thing off again, the piece that keeps him from biting down on the breathing tube, so they put a larger one in this time. He started coughing, and the look on his face told me he was in pain as his abdomen tightened with each spasm.
If I could only take his place.
Friday, April 17, 2009
And One More Step Back
For all our optimism earlier today, we have another hurdle to overcome. They had reduced the amount of help Parker was getting from the ventilator this morning so he was intiating every breath on his own. Then, the surgeon had to go back in and clean the opening in his abdomen and put in a smaller sponge to encourage it to begin to close on it's own. To heal. That all went fine with the exception of a residual fever of 100.5 degrees for most of the day, and a little bit more fluid in his lungs.
Dr. Garcia told us this morning, He seems to be out of imminent danger, the words that made my heart sing. But then I went back about 4:pm and Parker was very agitated. He was hot to touch, breathing hard, temperature up to 102.3, blood pressure and heart rate up. Nurse Roger said they had tried to reduce the ventilator again and Parker had fought like a wild man. He said he'd never seen anyone so strong and so mad and so wild in his whole career.
Parker was able to spit out the thing in his teeth that is keeping him from biting the ventilator tube, and he clamped his teeth on it so he couldn't breath. Then he ripped one of the arm cuffs off so one hand wasn't tied down to the bed rail, and he got a hold of one of the tubes coming out of his pancreas. Roger saw it instantly and was able to get his hand undone from it before he could pull it out. All in all it was a disasterour attempt, which to be honest, I think might have been aggravated by Roger. I'm pretty sure Parker doesn't like him. Roger is the one who pounded on his chest to wake him up one day. Parker HATES to be startled awake.
I put the fan on in his room because he really, really likes the noise and likes it being cold. I turned out the lights and turned off the tv that Roger had turned on. I took his hand in mine and he gripped it really, really hard. A couple of times he started to cough or gag and his face looked like he was in agony, his stomach muscles gathered up in tight knots, right where it is laid open with the sponge. I saw one of the Critical Care Specialists who said, while his improvement since Tuesday is as much as the national debt, he is till a very, very sick young man.
I left to go shower at the League House room, and rushed back. My stomach is in knots. My knees feel weak and my heart is racing. I pray constantly, asking God to please let me know what it is we are to learn from all this ... TEACH ME .... so Parker can get well. So my child won't hurt, and won't be afraid.
Audra is his nurse tonight. She's from Lubbock, has red hair and the sweetest Southern accent. You'd think she was from Georgia. We really like her, she has a very peaceful aura. Maybe that's why she was named Audra.
John and I just went to see him. We didn't go into the room, we wanted to give him time to feel peaceful and relax. His temp is down to 101 with Tylenol, but his white cell count is up again. Not much, but enough to know it is going in the wrong direction. Audra is taking blood to have cultured to see what else might be growing. The infectious disease people have been by to see him and are adding another antibiotic, even though they don't have results from a new culture. But it is something, it is a start.
Please keep fighting Parker, we have a long way to go. I love you.
Dr. Garcia told us this morning, He seems to be out of imminent danger, the words that made my heart sing. But then I went back about 4:pm and Parker was very agitated. He was hot to touch, breathing hard, temperature up to 102.3, blood pressure and heart rate up. Nurse Roger said they had tried to reduce the ventilator again and Parker had fought like a wild man. He said he'd never seen anyone so strong and so mad and so wild in his whole career.
Parker was able to spit out the thing in his teeth that is keeping him from biting the ventilator tube, and he clamped his teeth on it so he couldn't breath. Then he ripped one of the arm cuffs off so one hand wasn't tied down to the bed rail, and he got a hold of one of the tubes coming out of his pancreas. Roger saw it instantly and was able to get his hand undone from it before he could pull it out. All in all it was a disasterour attempt, which to be honest, I think might have been aggravated by Roger. I'm pretty sure Parker doesn't like him. Roger is the one who pounded on his chest to wake him up one day. Parker HATES to be startled awake.
I put the fan on in his room because he really, really likes the noise and likes it being cold. I turned out the lights and turned off the tv that Roger had turned on. I took his hand in mine and he gripped it really, really hard. A couple of times he started to cough or gag and his face looked like he was in agony, his stomach muscles gathered up in tight knots, right where it is laid open with the sponge. I saw one of the Critical Care Specialists who said, while his improvement since Tuesday is as much as the national debt, he is till a very, very sick young man.
I left to go shower at the League House room, and rushed back. My stomach is in knots. My knees feel weak and my heart is racing. I pray constantly, asking God to please let me know what it is we are to learn from all this ... TEACH ME .... so Parker can get well. So my child won't hurt, and won't be afraid.
Audra is his nurse tonight. She's from Lubbock, has red hair and the sweetest Southern accent. You'd think she was from Georgia. We really like her, she has a very peaceful aura. Maybe that's why she was named Audra.
John and I just went to see him. We didn't go into the room, we wanted to give him time to feel peaceful and relax. His temp is down to 101 with Tylenol, but his white cell count is up again. Not much, but enough to know it is going in the wrong direction. Audra is taking blood to have cultured to see what else might be growing. The infectious disease people have been by to see him and are adding another antibiotic, even though they don't have results from a new culture. But it is something, it is a start.
Please keep fighting Parker, we have a long way to go. I love you.
He's In Your Hands Now, God
I'm trying to remember and document everything that has happened since Monday. There are big gaps in my posting due to the obvious circumstances, but I want to be sure I remember everything as best I can because Parker will want to know.
On Monday, April 13th, we went for the CT scan, but before we went I knew Parker wasn't as well as he had been last Friday. But we had to have the CT scan and they had waited so long because he hadn't been stable enough to move before, so we went.
The event was horrible. Parker screamed in the back of the ambulance, the pain was so intense. We had a nurse with us, Sherry, who was wonderful. She continued to administer pain meds and heart meds the whole time. By the time we got back I knew he had turned a corner and was headed in the wrong direction.
We waited for the results of the scan, waiting to find out what was going to happen. Parker was showing signs of shock ~ low BP, rapid heart rate, sweating so profusely he drenched 4 pillows and his mattress within an hour. He was cold to touch, light headed and dizzy. So much pain.
The nurse, Allison, called the doctor who had taken over for Dr. Turner (who was on vacation). Dr. Lam was the one who actually ordered the CT scan so the results had to come back to her, not to the surgeon, Dr. Garcia.
The rage I feel about what happened next, I have to keep reminding myself we will deal with it later. I don't want ANYTHING to invite negative energy into Parker's room, and once the rage-gate opens it will be hard for me to turn back. We left the CT place at 3PM. They told us Dr. Lam would have the results from the radiologist within 20 minutes, so we expected to have some kind of communication as soon as we got back.
By 6:pm, as Parker's condition continued to deteriorate, the nurse called for Dr. Lam, not sure why we hadn't heard anything. Even the surgeon had to wait for her. Dr. Lam had gone home for the day. She had not come to see us, she had not contacted the nurses, she had not contacted Dr. Garcia. She left. Okay the rage is building and I get to go see Parker in 40 minutes so I will stop talking about her now, except to say she will NEVER, EVER get near my son again.
Thank God Allison had the foresight to call another hospitalist who was covering for the absent Dr. Lam. I can't remember his name, but he came up, looked at the charts, looked at Parker, and called the surgeon AND the Critical Care Specialist and everything happened so fast. Parker was taken down to ICU.
The STUPIDEST nurse on the planet kept trying to interrupt getting him to ICU because he hadn't had his bath yet. HUH?????? Oh my God, I kept thinking, keep this stupid woman out of my way.
Parker looked at me and said, Mom get her away from me, I don't want her near me!
Some of the people we liked the most on the fourth floor helped get us down to ICU. Red and James among them. Once in ICU Parker's friend, Jamie. showed up. It was brave of her to come, she is squeamish and frightened seeing Parker the way he is. She hasn't seen him like he is now and I won't allow her.
They took Parker off for surgery. He was frightened and full of questions. What of this happens, what if that happens.... I love you, Parker.
If anything happens, you know how much I love you Mom, right?
Of course I do.
Okay, I just want to be sure. When is Dad coming?
He'll be here first thing in the morning. He'll see you as soon as you wake up.
Okay, be sure he and James know how much I love them.... just in case. Okay?
Of course, honey.
I squeezed his hand three times and he squeezed mine back four. And then he was gone.
Parker went off for surgery about 10:30PM. Jamie, another friend of Parker's named Nicole, and I waited in the ICU waiting room. I found their chatter to distract me just enough.
About 2:30AM Dr. Garcia came and said he was out of surgery and as far as the surgery went everything was fine. He did have to open him up rather than just doing it laproscopically, but he cleaned out the necrotic tissue, drained the cyst, got rid of the other two (I think he said he got rid of the other two but I will have to ask him that to be sure), and he said the pus in the main softball size cyst was really thick, filled with tissue, nasty, nasty infection. He was surprised it had gotten so bad so quickly.
The very nice anesthesiologist came out and said she did have to turn the anesthesia off for a few minutes when his blood pressure dropped off the face of the planet, so she said he may have some memory of the surgery. By the time the nurse came to get me, he was sleeping, I was exhausted and fell asleep in the chair in his room.
John boarded a plane at 8:am eastern time. It wasn't until about 8:am TX time that I found out what was happening. I went back to see him and the Critical Care Specialist, Dr. Morrison, told me with a grim face that Parker was declining. His organs were failing, they were starting him on dialysis, his heart wouldn't maintain itself, his lungs were failing .... Everything was going wrong.
There are a lot of pieces of that day that are a blur to me. I know I called James and told him he needed to come. NOW. Get a flight and come right away. I didn't tell him everything, just that he needed to come.
I called Parker's boss, Dustin, and could barely breathe through my tears when I told him what was happening.
I'm on my way, he said.
I sat by myself in the waiting room, sobbing, until Dustin came. Dustin sat with me most of the day, and thank God he isn't a "it will be okay" person. I might have punched him. It wasn't okay. Dustin knew that and just held my hand.
I prayed like I have never prayed before, and every time I stopped praying my mind would torture me by imagining what life would be like without my beautiful, precious boy ... it just isn't something you can imagine.
At some point I called Mom and Dad. Dad cried, and I worried what it was doing to his own heart. Dr. Garcia came and said he was so sorry, he had no idea he would get this bad.
John arrived about 11:30am. The news wasn't any better. Dr. Garcia came back and said he had to open Parker back up and drain the fluids that were building up in his abdomen, which were putting pressure on his organs, causing them to fail, was that okay with us.
Okay?? Of course You do whatever you need to do to help him live!
This is his best chance, Dr. Garcia said.
Go! Run! Save my child's life! Now!
Later he told us as soon as the pressure was relieved, Parker's blood pressure came up as he hoped it would, but once they had to sedate him again more fully, it dropped. The fact that it bounced up was good, but not good enough. He was so sorry. He told us the only thing Parker had going for him was his youth and the fact that he was healthy to start with.
I knew better, though. I knew the value of prayer and I knew God was here. I also knew it was up to Him. He had given the surgeons and the nurses and the critical care people and all of them the remarkable tools they needed to work on my son, to fix him, hopefully to make him well. But I also knew they had done, and were doing, everything they could, with every resource possible, to make him well. And on that day, with an even greater faith than I'd ever had before in my life, I knew I had to turn Parker's life over to God. It was up to Him.
My sister-in-law Liz sent me a prayer to St. Jude via email which she said she had worn out herself when Max was sick. I pulled it up on my computer screen and read it, out loud, all day.
Every time I would start to think about life without Parker, I would mentally slap myself and force my mind to envision other things. Every time I closed my eyes, laying on the little half couch in the waiting room, my body exhausted from the energy it takes to cry, I had visions of wrapping Parker in a soft, warm, white blanket and raising him up to the Light to heal. To be healed. To be comfortable. I prayed more in that one day than I have in my life. I prayed for serenity, for Parker not to be frightened or in pain, and I prayed for God's will to be done. And if He had a mind to it, could His will please be the same as mine?
I had a feeling that when Parker heard James's voice it would help. Call it a mother's instinct but I just knew. James didn't know bfore he got here just how sick Parker was. I couldn't tell him everything before he was trapped on a plane, before he could get here. Dustin picked him up and brought him right to us.
As soon as he got here, I told him what to expect. James had been resistant to coming down before because he couldn't stand the thought of seeing his brother in so much pain. He needed to be prepared for what he was about to see. I told him under no circumstances was he to let Parker hear the fear in his voice. Every single thing needed to be positive. Every word, every expression. He could fall apart when he left the room but not before.
I explained about Parker's body being open on the bed, his guts held in with a sponge. I told him about the tubes coming from both sides of his abdomen, the ventilator tube going down his throat and into his lungs, the nasal gastric tube up his nose into his stomach, the hundreds of leads and wires and IV's coming from every part of his body, the facial brace holding his cheeks tight so he couldn't bite down on the ventilator, all the machines and beeps and horn sounds that go on in a room where a person is being kept alive my machines and drugs alone.
James was a champion. He squeezed Parker's hand and leaned close to him. I'm here, Parker. I here now and I'm waiting for you to get well so we can go see some movies, so hurry and get well, okay?
He said this knowing, at that time, that the doctors didn't have a lot of hope. There had been one slight change for the positive by then, and for the life of me right now I can't remember what it was. It wasn't enough to make Dr. Morrison's face look any less grim, but it was something to hold onto over night.
The minute he was in the hallway James fell apart. But that's okay. He did was he needed to do when he was in Parker's room.
I slept a little bit that night. Knowing James was here, knowing Parker knew his brother and both his parents were here, gave me hope. I know Parker, and I know if anything is going to make a difference it would be that his family was here together for him.
The next morning, Wednesday, I was in his room at 6:am. His white cell count had been 44,000 but had dropped to 38,500! I certainly had never heard of a white count that high and nurse Sharon only looked worried when I asked her about it. But there had been a slight change in the right direction. Very slight. The fact that he was still alive was huge on it's own.
All day Wednesday I thought about Tuesday. It is a day I will never, ever in my life get over. I knew the value of the prayers coming from all over the country, and the incredible strength of his will, and the courage it was taking for him to fight this. He was a real champion on that day.
My body was sore from the emotion of the day before. My face swollen and red. I hadn't eaten since Sunday, Easter, when I had Taco Cabana for my Easter dinner, so I was weak from no nutrition, dehydrated from not being able to drink water.
But my beautiful precious son was still alive. What more could a Mom ask for?
On Monday, April 13th, we went for the CT scan, but before we went I knew Parker wasn't as well as he had been last Friday. But we had to have the CT scan and they had waited so long because he hadn't been stable enough to move before, so we went.
The event was horrible. Parker screamed in the back of the ambulance, the pain was so intense. We had a nurse with us, Sherry, who was wonderful. She continued to administer pain meds and heart meds the whole time. By the time we got back I knew he had turned a corner and was headed in the wrong direction.
We waited for the results of the scan, waiting to find out what was going to happen. Parker was showing signs of shock ~ low BP, rapid heart rate, sweating so profusely he drenched 4 pillows and his mattress within an hour. He was cold to touch, light headed and dizzy. So much pain.
The nurse, Allison, called the doctor who had taken over for Dr. Turner (who was on vacation). Dr. Lam was the one who actually ordered the CT scan so the results had to come back to her, not to the surgeon, Dr. Garcia.
The rage I feel about what happened next, I have to keep reminding myself we will deal with it later. I don't want ANYTHING to invite negative energy into Parker's room, and once the rage-gate opens it will be hard for me to turn back. We left the CT place at 3PM. They told us Dr. Lam would have the results from the radiologist within 20 minutes, so we expected to have some kind of communication as soon as we got back.
By 6:pm, as Parker's condition continued to deteriorate, the nurse called for Dr. Lam, not sure why we hadn't heard anything. Even the surgeon had to wait for her. Dr. Lam had gone home for the day. She had not come to see us, she had not contacted the nurses, she had not contacted Dr. Garcia. She left. Okay the rage is building and I get to go see Parker in 40 minutes so I will stop talking about her now, except to say she will NEVER, EVER get near my son again.
Thank God Allison had the foresight to call another hospitalist who was covering for the absent Dr. Lam. I can't remember his name, but he came up, looked at the charts, looked at Parker, and called the surgeon AND the Critical Care Specialist and everything happened so fast. Parker was taken down to ICU.
The STUPIDEST nurse on the planet kept trying to interrupt getting him to ICU because he hadn't had his bath yet. HUH?????? Oh my God, I kept thinking, keep this stupid woman out of my way.
Parker looked at me and said, Mom get her away from me, I don't want her near me!
Some of the people we liked the most on the fourth floor helped get us down to ICU. Red and James among them. Once in ICU Parker's friend, Jamie. showed up. It was brave of her to come, she is squeamish and frightened seeing Parker the way he is. She hasn't seen him like he is now and I won't allow her.
They took Parker off for surgery. He was frightened and full of questions. What of this happens, what if that happens.... I love you, Parker.
If anything happens, you know how much I love you Mom, right?
Of course I do.
Okay, I just want to be sure. When is Dad coming?
He'll be here first thing in the morning. He'll see you as soon as you wake up.
Okay, be sure he and James know how much I love them.... just in case. Okay?
Of course, honey.
I squeezed his hand three times and he squeezed mine back four. And then he was gone.
Parker went off for surgery about 10:30PM. Jamie, another friend of Parker's named Nicole, and I waited in the ICU waiting room. I found their chatter to distract me just enough.
About 2:30AM Dr. Garcia came and said he was out of surgery and as far as the surgery went everything was fine. He did have to open him up rather than just doing it laproscopically, but he cleaned out the necrotic tissue, drained the cyst, got rid of the other two (I think he said he got rid of the other two but I will have to ask him that to be sure), and he said the pus in the main softball size cyst was really thick, filled with tissue, nasty, nasty infection. He was surprised it had gotten so bad so quickly.
The very nice anesthesiologist came out and said she did have to turn the anesthesia off for a few minutes when his blood pressure dropped off the face of the planet, so she said he may have some memory of the surgery. By the time the nurse came to get me, he was sleeping, I was exhausted and fell asleep in the chair in his room.
John boarded a plane at 8:am eastern time. It wasn't until about 8:am TX time that I found out what was happening. I went back to see him and the Critical Care Specialist, Dr. Morrison, told me with a grim face that Parker was declining. His organs were failing, they were starting him on dialysis, his heart wouldn't maintain itself, his lungs were failing .... Everything was going wrong.
There are a lot of pieces of that day that are a blur to me. I know I called James and told him he needed to come. NOW. Get a flight and come right away. I didn't tell him everything, just that he needed to come.
I called Parker's boss, Dustin, and could barely breathe through my tears when I told him what was happening.
I'm on my way, he said.
I sat by myself in the waiting room, sobbing, until Dustin came. Dustin sat with me most of the day, and thank God he isn't a "it will be okay" person. I might have punched him. It wasn't okay. Dustin knew that and just held my hand.
I prayed like I have never prayed before, and every time I stopped praying my mind would torture me by imagining what life would be like without my beautiful, precious boy ... it just isn't something you can imagine.
At some point I called Mom and Dad. Dad cried, and I worried what it was doing to his own heart. Dr. Garcia came and said he was so sorry, he had no idea he would get this bad.
John arrived about 11:30am. The news wasn't any better. Dr. Garcia came back and said he had to open Parker back up and drain the fluids that were building up in his abdomen, which were putting pressure on his organs, causing them to fail, was that okay with us.
Okay?? Of course You do whatever you need to do to help him live!
This is his best chance, Dr. Garcia said.
Go! Run! Save my child's life! Now!
Later he told us as soon as the pressure was relieved, Parker's blood pressure came up as he hoped it would, but once they had to sedate him again more fully, it dropped. The fact that it bounced up was good, but not good enough. He was so sorry. He told us the only thing Parker had going for him was his youth and the fact that he was healthy to start with.
I knew better, though. I knew the value of prayer and I knew God was here. I also knew it was up to Him. He had given the surgeons and the nurses and the critical care people and all of them the remarkable tools they needed to work on my son, to fix him, hopefully to make him well. But I also knew they had done, and were doing, everything they could, with every resource possible, to make him well. And on that day, with an even greater faith than I'd ever had before in my life, I knew I had to turn Parker's life over to God. It was up to Him.
My sister-in-law Liz sent me a prayer to St. Jude via email which she said she had worn out herself when Max was sick. I pulled it up on my computer screen and read it, out loud, all day.
Every time I would start to think about life without Parker, I would mentally slap myself and force my mind to envision other things. Every time I closed my eyes, laying on the little half couch in the waiting room, my body exhausted from the energy it takes to cry, I had visions of wrapping Parker in a soft, warm, white blanket and raising him up to the Light to heal. To be healed. To be comfortable. I prayed more in that one day than I have in my life. I prayed for serenity, for Parker not to be frightened or in pain, and I prayed for God's will to be done. And if He had a mind to it, could His will please be the same as mine?
I had a feeling that when Parker heard James's voice it would help. Call it a mother's instinct but I just knew. James didn't know bfore he got here just how sick Parker was. I couldn't tell him everything before he was trapped on a plane, before he could get here. Dustin picked him up and brought him right to us.
As soon as he got here, I told him what to expect. James had been resistant to coming down before because he couldn't stand the thought of seeing his brother in so much pain. He needed to be prepared for what he was about to see. I told him under no circumstances was he to let Parker hear the fear in his voice. Every single thing needed to be positive. Every word, every expression. He could fall apart when he left the room but not before.
I explained about Parker's body being open on the bed, his guts held in with a sponge. I told him about the tubes coming from both sides of his abdomen, the ventilator tube going down his throat and into his lungs, the nasal gastric tube up his nose into his stomach, the hundreds of leads and wires and IV's coming from every part of his body, the facial brace holding his cheeks tight so he couldn't bite down on the ventilator, all the machines and beeps and horn sounds that go on in a room where a person is being kept alive my machines and drugs alone.
James was a champion. He squeezed Parker's hand and leaned close to him. I'm here, Parker. I here now and I'm waiting for you to get well so we can go see some movies, so hurry and get well, okay?
He said this knowing, at that time, that the doctors didn't have a lot of hope. There had been one slight change for the positive by then, and for the life of me right now I can't remember what it was. It wasn't enough to make Dr. Morrison's face look any less grim, but it was something to hold onto over night.
The minute he was in the hallway James fell apart. But that's okay. He did was he needed to do when he was in Parker's room.
I slept a little bit that night. Knowing James was here, knowing Parker knew his brother and both his parents were here, gave me hope. I know Parker, and I know if anything is going to make a difference it would be that his family was here together for him.
The next morning, Wednesday, I was in his room at 6:am. His white cell count had been 44,000 but had dropped to 38,500! I certainly had never heard of a white count that high and nurse Sharon only looked worried when I asked her about it. But there had been a slight change in the right direction. Very slight. The fact that he was still alive was huge on it's own.
All day Wednesday I thought about Tuesday. It is a day I will never, ever in my life get over. I knew the value of the prayers coming from all over the country, and the incredible strength of his will, and the courage it was taking for him to fight this. He was a real champion on that day.
My body was sore from the emotion of the day before. My face swollen and red. I hadn't eaten since Sunday, Easter, when I had Taco Cabana for my Easter dinner, so I was weak from no nutrition, dehydrated from not being able to drink water.
But my beautiful precious son was still alive. What more could a Mom ask for?
Thursday, April 16, 2009
Eye Contact
Quick update: After I wrote the last post I went down to see Parker. Nurse said nothing new, they will draw more blood and have a report for me when I can go back in at 4:pm.But! The absolutely wonderful news is that I took his hand and called his name, kind of loud, and he actually turned his head and looked right at me!!! My face almost ripped apart I was smiling so big, I was so elated! While he has opened his eyes before, we have had no eye contact, just blank stares. But he looked right at me and I told him what a great job he was doing. I told him not to worry about all the stuff attached to him, he just needed to think about getting well.
Then when I said, I love you, he scrunched his eyebrows four times. In our home, ever since the boys were little that means, I love you too!
Wednesday, April 15, 2009
Breathless
I was all prepared to write a long post explaining the series of events between Monday and today, as I know there are gaps and I will want to have it written somewhere. However, we had a little drop in the "good news" department today.
The infectious disease people called from Brackenridge and said the bacteria in Parker's cyst was called VRE. It is a cousin in type to MRSA in that it is highly resistant to antibiotics. Parker is now in isolation. This is mainly to protect the other people since he already has it. So when we go see him we gown up and wear gloves, then we disinfect when we leave his room.
Sound familiar?
He also has a little more fluid in his lungs, which is of concern as well. We asked to see the surgeon because we understand him better than the Critical Care Specialist (who is obviously brilliant, but a little difficult to read as far as how serious things are .... everything is very grim, which I am sure is part of his intellect and his field of work).
Dr. Garcia came and said he isn't outrageously concerned about these things, the VRE was already present in the cyst on his pancreas. It isn't a brand new bacteria, it is what was causing the septic infection. They were just now able to identify it because they were growing the cultures at the other hospital. It is a highly contagious bacteria and very difficult to treat, but apparently Parker's will, the prayer, and his youth are fighting it already as his white cell count is down even a little more today.
Dr. Garcia also explained about the additional fluid in his lungs, and isn't surprised to see a little more in there today as part of a process the body can go through. He reminded us that Parker's disease is very, very complicated with a lot of twists and turns they don't normally come across in this magnitude, but fortunately, going into this he was young and healthy.
Parker now has an infectious disease specialist working on him. By the time this is over he will have had just about every specialist there is as part of his team. His temperature remains stable on its own, his heart rate is down to the 120's (which is GREAT compared to Monday and Tuesday when it was in the 180's) and his blood pressure was up to 101/45 last time I was there. It had dropped as low as 75/35 at one point (that is the lowest I saw it). SOOOOO scary.
James went over and got a room at Seton League House which offers clean rooms with showers, laundry privileges and free parking for $15 a night for people from the hospital who are from out of town. I haven't gone to sleep there yet because, even though it is a 5 minute walk, it feels too far away still. I may go tonight if the news improves. Otherwise I will continue to sleep on the chair in the ICU/Surgical Waiting Room. It would be more restful if I were a contortionist.
Last night some jerk comes over to me about 4:am, flips the back of his hand on my knee and says, Hey you got a cigarette?
Are you serious??? Really???? Did you see the sign that says ICU Waiting Room? Do you know that means people in here don't sleep because they are praying so hard to keep their loved ones alive, and you're going to wake me up and ask for a cigarette????
The night before there was a family in here with about 15 family members who were jamming out to music coming from someones laptop, and complaining quite loudly that they had to pay for things from the vending machine. They don't give you that for free? What's that s*#&?
My patience is waning.
Last night I was looking for a blanket and this little ten year old boy laying on one of the recliners offered me his. I told him thank you but no. This morning he came to talk to me. His Mom is in ICU. She had gastric surgery years ago and ever since then has suffered from ulcers. She just had surgery to fix the them because she had been throwing up blood for a week. We talked about which nurses we liked, which we didn't like, and he told me he thought it was interesting that all the nurses he especially liked were tall, not short, and he was sure that meant he would marry a tall girl someday. I asked if his Mom was tall and he said, Well not right now because she's laying on her back.
He asked me if I would come meet his Mom after I saw Parker. I told him I would be very happy to and was pleased he asked me. Now I can't go meet her because I don't want to carry anything weird in there from Parker's room, but when I see the boy I'll tell him I want to wrote a note to her. He is a lovely child.
Even in the midst of anguish and pain and worry and grief, God shines a little light in my corner of the room in the form of a child.
I love you Parkie, keep fighting!
The infectious disease people called from Brackenridge and said the bacteria in Parker's cyst was called VRE. It is a cousin in type to MRSA in that it is highly resistant to antibiotics. Parker is now in isolation. This is mainly to protect the other people since he already has it. So when we go see him we gown up and wear gloves, then we disinfect when we leave his room.
Sound familiar?
He also has a little more fluid in his lungs, which is of concern as well. We asked to see the surgeon because we understand him better than the Critical Care Specialist (who is obviously brilliant, but a little difficult to read as far as how serious things are .... everything is very grim, which I am sure is part of his intellect and his field of work).
Dr. Garcia came and said he isn't outrageously concerned about these things, the VRE was already present in the cyst on his pancreas. It isn't a brand new bacteria, it is what was causing the septic infection. They were just now able to identify it because they were growing the cultures at the other hospital. It is a highly contagious bacteria and very difficult to treat, but apparently Parker's will, the prayer, and his youth are fighting it already as his white cell count is down even a little more today.
Dr. Garcia also explained about the additional fluid in his lungs, and isn't surprised to see a little more in there today as part of a process the body can go through. He reminded us that Parker's disease is very, very complicated with a lot of twists and turns they don't normally come across in this magnitude, but fortunately, going into this he was young and healthy.
Parker now has an infectious disease specialist working on him. By the time this is over he will have had just about every specialist there is as part of his team. His temperature remains stable on its own, his heart rate is down to the 120's (which is GREAT compared to Monday and Tuesday when it was in the 180's) and his blood pressure was up to 101/45 last time I was there. It had dropped as low as 75/35 at one point (that is the lowest I saw it). SOOOOO scary.
James went over and got a room at Seton League House which offers clean rooms with showers, laundry privileges and free parking for $15 a night for people from the hospital who are from out of town. I haven't gone to sleep there yet because, even though it is a 5 minute walk, it feels too far away still. I may go tonight if the news improves. Otherwise I will continue to sleep on the chair in the ICU/Surgical Waiting Room. It would be more restful if I were a contortionist.
Last night some jerk comes over to me about 4:am, flips the back of his hand on my knee and says, Hey you got a cigarette?
Are you serious??? Really???? Did you see the sign that says ICU Waiting Room? Do you know that means people in here don't sleep because they are praying so hard to keep their loved ones alive, and you're going to wake me up and ask for a cigarette????
The night before there was a family in here with about 15 family members who were jamming out to music coming from someones laptop, and complaining quite loudly that they had to pay for things from the vending machine. They don't give you that for free? What's that s*#&?
My patience is waning.
Last night I was looking for a blanket and this little ten year old boy laying on one of the recliners offered me his. I told him thank you but no. This morning he came to talk to me. His Mom is in ICU. She had gastric surgery years ago and ever since then has suffered from ulcers. She just had surgery to fix the them because she had been throwing up blood for a week. We talked about which nurses we liked, which we didn't like, and he told me he thought it was interesting that all the nurses he especially liked were tall, not short, and he was sure that meant he would marry a tall girl someday. I asked if his Mom was tall and he said, Well not right now because she's laying on her back.
He asked me if I would come meet his Mom after I saw Parker. I told him I would be very happy to and was pleased he asked me. Now I can't go meet her because I don't want to carry anything weird in there from Parker's room, but when I see the boy I'll tell him I want to wrote a note to her. He is a lovely child.
Even in the midst of anguish and pain and worry and grief, God shines a little light in my corner of the room in the form of a child.
I love you Parkie, keep fighting!
Thank You St. Jude
Parker made it through the night!
That statement stands alone in magnificence. He is still alive this morning.
The surgeon just came by to see us and said there has been a slight change in direction for the better. He said where as last night he was on the verge of leaving us, he is now 'just" in a critical state, but improving. Some parts of his body are starting to work again, parts that had shut down before and were being sustained by machines alone. Just the teeniest tiniest bit. But his body must be willing itself to start working again.
I know it has to do with prayer, and I know it has to do with his will, and with all the positive energy coming from everyone out there. I thank God for giving the doctors and nurses the tools they need to make him well. And I know for a fact that his hearing his brother's voice last night when he arrived made a huge difference. I know Parker can hear us, and even though his body is grotesque, left open in the middle exposing his guts, his spirit and his soul are working hard to rise to this challenge. The greatest he has ever faced.
In all of this, even yesterday before James got here and I thought it was a matter of hours, or minutes, before I lost my precious son, my faith has never wavered. In fact, it has become stronger still. Something settled over me and reminded me that whatever God's will is, that is what I have to accept. I have turned it over to God.
One of my favorite Bible verses:
Isaiah 40:31 But they that wait upon the LORD shall renew their strength; they shall mount up with wings as eagles; they shall run, and not be weary; and they shall walk, and not faint.
That statement stands alone in magnificence. He is still alive this morning.
The surgeon just came by to see us and said there has been a slight change in direction for the better. He said where as last night he was on the verge of leaving us, he is now 'just" in a critical state, but improving. Some parts of his body are starting to work again, parts that had shut down before and were being sustained by machines alone. Just the teeniest tiniest bit. But his body must be willing itself to start working again.
I know it has to do with prayer, and I know it has to do with his will, and with all the positive energy coming from everyone out there. I thank God for giving the doctors and nurses the tools they need to make him well. And I know for a fact that his hearing his brother's voice last night when he arrived made a huge difference. I know Parker can hear us, and even though his body is grotesque, left open in the middle exposing his guts, his spirit and his soul are working hard to rise to this challenge. The greatest he has ever faced.
In all of this, even yesterday before James got here and I thought it was a matter of hours, or minutes, before I lost my precious son, my faith has never wavered. In fact, it has become stronger still. Something settled over me and reminded me that whatever God's will is, that is what I have to accept. I have turned it over to God.
One of my favorite Bible verses:
Isaiah 40:31 But they that wait upon the LORD shall renew their strength; they shall mount up with wings as eagles; they shall run, and not be weary; and they shall walk, and not faint.
Tuesday, April 14, 2009
Critical
I only have time to write and say Parker is critical. After two surgeries he has septic shock, organ failure, and so many other things I can't barely keep track of them all. His father and I sit and wait for news. His brother is on his way, should be landing at the airport soon. Parker's boss is picking James up and will bring him here to me. Once James arrives and I know Parker has heard his voice, I may be able to sleep.
For now I have visions of lifting Parker's body up in a warm white blanket and holding him in the Light to heal. Please do the same. If he makes it through the next 36 hours his chances are slightly better.
I love you Parkie. You are my sunshine. :-)
For now I have visions of lifting Parker's body up in a warm white blanket and holding him in the Light to heal. Please do the same. If he makes it through the next 36 hours his chances are slightly better.
I love you Parkie. You are my sunshine. :-)
Monday, April 13, 2009
Flash Backs
Added in May: I wrote this post the last morning of parker's first stay in IMC. Before the ambulance ride to Round Rock, brofre he went into shock, before the surgery and all the rest. This day is one that, for the rest of my life, I will have nightmares about. It was only because of two nurses, Sherrie and Allison, that the bad turn Parker took on this day didn't kill him. Thank you to both of you.
Written the morning of April 13th: A friend of mine, who happens to be an editor, remarked to me that it is hard to know what happened to Parker from reading this blog. I am going to write a brief summary of flash backs (she isn't the first person who implied there was a lot of missing information, but she was the first that spelled it out, as only an editor can, forcing me to respond). I will be as brief as possible, but I do have a tendency toward the writer's version of verbal diarrhea:
March 10th ~ About 10:pm I got a text from Parker with the following text message: "I'm at hospital. Don't call."
Really Parker? Don't call with a message like that? Actually at first I assumed he'd had to take a friend to the hospital from work. I mean, who sends that message to their MOTHER who is 2000 miles away? It wasn't until I got a hold of his friend Jamie that I knew he was sick.
Here is a link to the first post I made about it, but this is on a totally different blog I was working on before I started this one: http://leapoffaith77.blogspot.com/2009/03/when-your-child-is-ill.html
South Austin Hospital ~ Parker went in on the 10th and we left the night of the 23rd. The original diagnosis was severe acute pancreatitis caused by what they assumed were gall stones. After two weeks of resting his pancreas, his numbers were better so they felt he was okay to go home. He was to have an appointment within two weeks with an internist for follow up, then schedule an appointment to see a surgeon who could take out the gall bladder.
Friday after he got out of the hospital we had an appointment with Dr. Daghestani, who I believe to be one of the best patient-friendly doctors I've ever known. He urged us to get the gall bladder out quickly because Parker's pancreas enzyme numbers were increasing again, indicating he wasn't fixed. At that point Parker had still be laying flat in bed at home, not able to keep down applesauce or jello with any regularity.
Parker's Dad came Friday, I left Saturday, assuming Parker was going to have the gall bladder surgery and all would be well.
Wednesday Parker and his Dad met with the surgeon who asked for an MRI before planning the surgery. He had a hunch, and thank God he acted on it. Within two hours of the MRI Dr. Garcia, the surgeon, AND his office called and said to get Parker into the hospital right away! I sat tight for a few agonizing hours at work, waiting to see if it was just to do the gall bladder surgery or what was up.
When I heard from John he was quite alarmed. The hospital put Parker into ICU. The MRI had shown many cysts and lesions on the pancreas. Thank God I had my own hunch and had booked a flight for that afternoon, just in case. I was on my way back to TX.
Seton Medical Center ~ Parker came into Seton Medical Center on April 2nd with a diagnosis of severe acute pancreatitis. There are multiple cysts on his pancreas, the largest being 10 cm, which apparently is TX sized. That one also is sitting near the opening to his small intestine, blocking it and causing additional pain. Not to mention keeping it from allowing things to drain from his stomach.
The first few days, when Parker was in ICU, were hell. Well, the whole thing is hell, but that was an especially intense kind of hell. Parker had a blood clot in his lungs. Couldn't move, yet he was violently throwing up every hour to hour and a half. Critical care lung specialist came, but we couldn't have CT scan done because we couldn't move him. So many complications.
* They couldn't do this because of that, they couldn't do that because of this.
* They had him on Toporol for blood pressure but had to take him off because he was wheezing.
* They had him on morphine, but took him off because he was hallucinating to the point where he was on the verge of getting out of control.
* They took him off blood thinners once they thought the clot had dissolved because he was bleeding from his esophagus (from too much stomach acid traveling through when he would throw up).
* He had become anemic, so they gave him a bag of black looking stuff they said was iron.
* They put a tube up his nose and into his stomach because his body isn't draining the acids and bile that build up due to the blockage from the cyst.
* They tried to cap the tube twice and see if his stomach would drain on its own, but it didn't so they had to hook it back up.
* His muscles have started to atrophy from laying in bed for a month, but getting him to move brings on an horrible onslaught of pain, which can become unmanageable.
* His blood pressure shot up to 201/178 once and they gave him an emergency dose of something that sounded really scary. The look on the nurse's face was scarier.
* His blood sugar flies up because of the trauma to the pancreas, so he gets insulin injections in his belly. His whole stomach looks like the aftermath of a hurricane.
* He had a non-neurological narcotic related seizure episode that scared me to death, which is what made them take him off the morphine.
* He has had nothing by mouth since April 7th.
* His heart rate and BP go up and down, up and down. For the most part up. For instance, a normal heart rate is 60-90ish. Parker's ranges from 110 (last night) to 150, changing minute by minute.
* He can't really talk because he has a tube down the back of his throat. He is hooked up to cardiac machines, the NG tube, oxygen, two picc lines, IV antibiotics, nutrition that comes in a bag and looks like thick milk, pain meds he can pump himself, a blood pressure cuff, and two things on his legs to keep more blood clots from forming.
* His pain is such that he lashes out at me verbally (I understand), can't get comfortable, and wants to be put to sleep until this is over. One night they tied his hands to the bars of the bed during the night to keep him from pulling the tube out of his nose.
We are waiting now for the CT guided biopsy and scan. It is scheduled for later today. It is in a different building so they have to transport by ambulance. The nurse will come with us because they have to keep him on the pain meds while they are doing it, and they have to have the ability to give him the heart stuff if his BP or heart rate sky rocket.
Everything is complicated and scary, but in the midst of it all is my son, who might as well still be 3 years old in my heart, who needs an advocate, who needs someone to wipe his dry and cracked lips with a wet sponge, who needs someone to take off the blankets and put them back on forty times a night because his body cannot regulate his temperature right, and needs to tell him when his visions are real or nightmares. He still has nightmares of laying on the bathroom floor in his apartment all alone, not able to breathe, in excruciating pain, and not able to reach his phone to call the ambulance.
I have taken a temporary leave of absence from my job. Not sure how I am going to fund it, but there is no where I could be than right here, where I am, at this minute.
If the blockage is due to the inflammation of the pancreas, that is a matter of more time with nothing by mouth so the pancreas can rest ~ possibly 6 weeks. If it is caused by the location and pressure from the biggest cyst, that means possibly draining it, or it means waiting until it matures and builds a wall so they can surgically remove it. Another 6 weeks. The pancreas is made of mush, so they can't go in and cut it out and expect the pancreas to heal. Doesn't work that way.
Like I said, nothing is simple with this case. All the doctors working with him tell us this is one of the toughest cases they have ever seen, and acute pancreatitis is no picnic on a good day. But we have a great team of doctors, and we have lots of folks out there praying, and my lucky penny on the rail above his bed. Surely all that will help pull him through.
Written the morning of April 13th: A friend of mine, who happens to be an editor, remarked to me that it is hard to know what happened to Parker from reading this blog. I am going to write a brief summary of flash backs (she isn't the first person who implied there was a lot of missing information, but she was the first that spelled it out, as only an editor can, forcing me to respond). I will be as brief as possible, but I do have a tendency toward the writer's version of verbal diarrhea:
March 10th ~ About 10:pm I got a text from Parker with the following text message: "I'm at hospital. Don't call."
Really Parker? Don't call with a message like that? Actually at first I assumed he'd had to take a friend to the hospital from work. I mean, who sends that message to their MOTHER who is 2000 miles away? It wasn't until I got a hold of his friend Jamie that I knew he was sick.
Here is a link to the first post I made about it, but this is on a totally different blog I was working on before I started this one: http://leapoffaith77.blogspot.com/2009/03/when-your-child-is-ill.html
South Austin Hospital ~ Parker went in on the 10th and we left the night of the 23rd. The original diagnosis was severe acute pancreatitis caused by what they assumed were gall stones. After two weeks of resting his pancreas, his numbers were better so they felt he was okay to go home. He was to have an appointment within two weeks with an internist for follow up, then schedule an appointment to see a surgeon who could take out the gall bladder.
Friday after he got out of the hospital we had an appointment with Dr. Daghestani, who I believe to be one of the best patient-friendly doctors I've ever known. He urged us to get the gall bladder out quickly because Parker's pancreas enzyme numbers were increasing again, indicating he wasn't fixed. At that point Parker had still be laying flat in bed at home, not able to keep down applesauce or jello with any regularity.
Parker's Dad came Friday, I left Saturday, assuming Parker was going to have the gall bladder surgery and all would be well.
Wednesday Parker and his Dad met with the surgeon who asked for an MRI before planning the surgery. He had a hunch, and thank God he acted on it. Within two hours of the MRI Dr. Garcia, the surgeon, AND his office called and said to get Parker into the hospital right away! I sat tight for a few agonizing hours at work, waiting to see if it was just to do the gall bladder surgery or what was up.
When I heard from John he was quite alarmed. The hospital put Parker into ICU. The MRI had shown many cysts and lesions on the pancreas. Thank God I had my own hunch and had booked a flight for that afternoon, just in case. I was on my way back to TX.
Seton Medical Center ~ Parker came into Seton Medical Center on April 2nd with a diagnosis of severe acute pancreatitis. There are multiple cysts on his pancreas, the largest being 10 cm, which apparently is TX sized. That one also is sitting near the opening to his small intestine, blocking it and causing additional pain. Not to mention keeping it from allowing things to drain from his stomach.
The first few days, when Parker was in ICU, were hell. Well, the whole thing is hell, but that was an especially intense kind of hell. Parker had a blood clot in his lungs. Couldn't move, yet he was violently throwing up every hour to hour and a half. Critical care lung specialist came, but we couldn't have CT scan done because we couldn't move him. So many complications.
* They couldn't do this because of that, they couldn't do that because of this.
* They had him on Toporol for blood pressure but had to take him off because he was wheezing.
* They had him on morphine, but took him off because he was hallucinating to the point where he was on the verge of getting out of control.
* They took him off blood thinners once they thought the clot had dissolved because he was bleeding from his esophagus (from too much stomach acid traveling through when he would throw up).
* He had become anemic, so they gave him a bag of black looking stuff they said was iron.
* They put a tube up his nose and into his stomach because his body isn't draining the acids and bile that build up due to the blockage from the cyst.
* They tried to cap the tube twice and see if his stomach would drain on its own, but it didn't so they had to hook it back up.
* His muscles have started to atrophy from laying in bed for a month, but getting him to move brings on an horrible onslaught of pain, which can become unmanageable.
* His blood pressure shot up to 201/178 once and they gave him an emergency dose of something that sounded really scary. The look on the nurse's face was scarier.
* His blood sugar flies up because of the trauma to the pancreas, so he gets insulin injections in his belly. His whole stomach looks like the aftermath of a hurricane.
* He had a non-neurological narcotic related seizure episode that scared me to death, which is what made them take him off the morphine.
* He has had nothing by mouth since April 7th.
* His heart rate and BP go up and down, up and down. For the most part up. For instance, a normal heart rate is 60-90ish. Parker's ranges from 110 (last night) to 150, changing minute by minute.
* He can't really talk because he has a tube down the back of his throat. He is hooked up to cardiac machines, the NG tube, oxygen, two picc lines, IV antibiotics, nutrition that comes in a bag and looks like thick milk, pain meds he can pump himself, a blood pressure cuff, and two things on his legs to keep more blood clots from forming.
* His pain is such that he lashes out at me verbally (I understand), can't get comfortable, and wants to be put to sleep until this is over. One night they tied his hands to the bars of the bed during the night to keep him from pulling the tube out of his nose.
We are waiting now for the CT guided biopsy and scan. It is scheduled for later today. It is in a different building so they have to transport by ambulance. The nurse will come with us because they have to keep him on the pain meds while they are doing it, and they have to have the ability to give him the heart stuff if his BP or heart rate sky rocket.
Everything is complicated and scary, but in the midst of it all is my son, who might as well still be 3 years old in my heart, who needs an advocate, who needs someone to wipe his dry and cracked lips with a wet sponge, who needs someone to take off the blankets and put them back on forty times a night because his body cannot regulate his temperature right, and needs to tell him when his visions are real or nightmares. He still has nightmares of laying on the bathroom floor in his apartment all alone, not able to breathe, in excruciating pain, and not able to reach his phone to call the ambulance.
I have taken a temporary leave of absence from my job. Not sure how I am going to fund it, but there is no where I could be than right here, where I am, at this minute.
If the blockage is due to the inflammation of the pancreas, that is a matter of more time with nothing by mouth so the pancreas can rest ~ possibly 6 weeks. If it is caused by the location and pressure from the biggest cyst, that means possibly draining it, or it means waiting until it matures and builds a wall so they can surgically remove it. Another 6 weeks. The pancreas is made of mush, so they can't go in and cut it out and expect the pancreas to heal. Doesn't work that way.
Like I said, nothing is simple with this case. All the doctors working with him tell us this is one of the toughest cases they have ever seen, and acute pancreatitis is no picnic on a good day. But we have a great team of doctors, and we have lots of folks out there praying, and my lucky penny on the rail above his bed. Surely all that will help pull him through.
Sunday, April 12, 2009
The Opposite Of A Fairy Is A ......
I came back from Parker's apartment to find him highly aggitated, having difficulty breathing, sweating, crying, saying nasty things to anyone in sight. The moron day nurse had a syringe stuck in his picc line and couldn't get it out, so he had not had any pain meds in over an hour. She didn't want to switch with the line where he gets his nutrition because she wasn't sure if she was allowed.
So go ask!!!!!!
So go ask!!!!!!
Fairy Dust
Some of the most significant people in my life have been named Nancy. I've added another one to the list. Our nurse last night was a Nancy, and the first thing I learned from her is that even though I may think I don't judge people by the way they look, I do. We all do.When I first saw her I thought, Uh oh, she's a go-by-the-rules person and isn't going to let me stay here tonight. I mentally prepared for a fight because I wasn't leaving. Tears burned my eyes as I had mental images of standing outside the hospital in the rain, in the dark, banging on the door to get back in.
Nurse Nancy is tall, close to 6', with gray hair that hung neatly to her waist. She wore a laminated card on a chain around her neck that had all sorts of angels and cherubs and crosses and saints pinned to it. Nurse Nancy had that look of being in charge. Not a Nurse Ratchett, but like the type of Grandma who might raise an eyebrow at you if you misbehaved at her house. That eyebrow raising would live in your nightmares for weeks. Nurse Nancy had that kind of imposing look. So I scrunched myself down in my chair as far as I could and waited.
Boy was I wrong. She came in and introduced herself. Oh, I'm Nanci, too, I said. She didn't look up but said she was sure that meant we would get along just fine. My shoulders settled a teeny bit.
Nurse Nancy took a quick look around the room and got to work. Other nurses had left dirty sheets on the floor under the sink (I usually would have picked them up myself, but I'd missed that set), they had extra supplies thrown into buckets and bins that were stacked in random places, the table next to Parker's bed had three pair of scissors, four rolls of facial tape, left over caps, cups, lime green lollipop sponges and other assorted goodies I hadn't known what to do with. Within 15 minutes the place was immaculate. Nurse Nancy cleaned the room like I imagined she cleaned her kitchen at home: a place for everything, everything in its place.
Once that was done I swear I think she started to sprinkle fairy dust all around.
Are you staying here tonight? she asked. I straightened my shoulders.
Yes. I was ready for the fight.
Well, if there is anything I can do to make you more comfortable, please let me know.
Not what I expected, but suddenly there was something. I explained how we hadn't slept in days and nights because of all the interruptions, all the discomfort, all the noise. Within minutes, Nurse Nancy had set the machines to only beep on her beeper, not in the room. She had taken all the wires and tubes attached to Parker, neatly lay the excess in a towel and rolled it up like a tortilla, pinning it to the bed out of his way. She took the blood pressure cuff off his arm and turned it off so it wouldn't fill on its own with air every hour on the hour (so I had to go find the nurses and tell them to please come turn it off). She readjusted the position of his bed and he sighed in relief. She brought him a blanket that had been warmed in a machine and lay it over his body. She did this, she did that, and in the middle of it all a calm settled over the room. When she was done, she found a penny on the floor and placed it on the rail above his bed.
Must be a lucky penny, I'll put it right here to watch over him, she said.
I have four lucky pennies on the shelf in the window to watch over him, too.
The only unpleasant thing that happened was that Nurse Nancy had to plug the NG tube back into the suction machine because Parker had too much stuff building up in his stomach, meaning it still isn't draining properly.
But the good news is that, rather than being woken up every twenty minutes or so, I slept for two hours at a time, and Parker, I think, slept through a whole lot more than I did. Every time I woke up I looked at the clock and pinched myself. I felt so lucky.
Nurse Nancy is coming back tonight. I asked if we could request her. She said she would take care of it, and she smiled before she left.
James told me on the phone this morning that every tree is blooming around my cottage, the road is lined with daffodils and cherry blossoms, and the big giant tree outside my big, giant window is so loaded with blooms the limbs groan under the weight. Okay, so he didn't say it quite like that, but you get the idea. I miss my little cottage, but there is no where else I would be at this moment that by Parker's side.Today's nurse, Joanna, just told me Parker's blood pressure is high again and she is giving him an IV drug to lower it. I hope it doesn't keep us from the CT scan tomorrow. But I also hope if we do go for the CT scan the people who move him have access to the heart drugs in an emergency.
Footnote: Now I know for sure that Nurse Nancy is a fairy. I had an email this morning ~ AN AGENT FROM NEW YORK WANTS TO SEE MY MANUSCRIPT!!!
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