Your Light shall break forth like the morning, your healing shall spring forth speedily, and your righteousness shall go before you; the glory of the Lord shall be your rear guard.
Tuesday, April 21, 2009
Isaiah 58:8
Your Light shall break forth like the morning, your healing shall spring forth speedily, and your righteousness shall go before you; the glory of the Lord shall be your rear guard.
If You Don't Like Babble.....
Parker's 4th surgery is this morning at 10:30 TX time. For whatever reason, I am particularly nervous about this one and feel the need to babble .... not sure if that is spelled right. But if you don't want to read random thoughts and feelings, skip this chapter. I stole that line from Rebecca of Sunnybrook Farms in which there is a chapter titled, "If You Don't Like Conversation Skip This Chapter." It was the title in that book, and the whole of Black Beauty that made me know I would always want to be a novelist. I'm not yet, but I'm working on it.
Parker had a restless night. His nurse was a very cute, VERY young girl who smacked gum and said "crap" and "sucks" in every sentence. But she had a good heart and knew I was nervous and wanted to help me. Can't fault her for that. I would have thought when Parker woke up during the night and saw this adorable Barbie-Doll blond girl hanging over his face he would have been happy as a clam and fallen back to sleep. But he still fights that breathing tube and broke through two of the bite bars they put into his mouth to keep him from doing that. Naughty boy.
(Side note: There are a group of interns sitting behind me studying. Based on their conversations, I think they must work in the Critical Care Surgical Unit. One of them just said, I don't know, I woke up today and just felt it was going to be a good day. Another replied, Me too! I have a good feeling about today, too! I want them in with Parker when he goes for surgery.)
My sister sends me daily Words of Wisdom to keep me focused on something positive. Last night she wrote, Judge your success by the degree that you're enjoying peace, health and love.
In the love part I am apparently quite successful. The out pouring of love and concern and prayer and positive energy and good thoughts and gifts continues to astound me. So much more so than I ever imagined. I knew I had friends, don't get me wrong, but what I didn't expect or could have predicted was how supportive they would be, and how genuine I know their concern is. Most of them know Parker, and know him to be a caring, loving Gentle Giant. They are praying and sending positive energy (which are one in the same, in case you didn't know) his way. KEEP IT COMING TODAY!!! We're not done yet!
In the health department I am not as successful, but not unsuccessful either. I have some things to work on, and this experience has proven to me how important our health is. It is NOT something to be taken for granted. I'm setting goals for myself.
In the peace department .... hmmm, not sure what to say. I feel at peace with many things in my life. I feel at peace with my relationship with both my parents. I know my father is ill, but we have spent some very important moments together over the past year talking about the things that matter. He knows how I feel, he knows the influence he has had on my life, and he knows his legacy will live on in the gentle things he taught me.
My mother's and my relationship has always been more complicated ~ typical of a mother and daughter. But through this experience with Parker I have learned a lot about my mother, and why she does the things she does. I have also seen the courage in her that I don't think even she was aware of, courage that kept her from calling me thirty times a day, courage to understand that I needed time and space to deal with this without her hovering. Courage to give me what I needed most, which was her quiet love and support from 2000 miles away. And the tremendous courage to not turn to something that would numb her pain, because she knew she needed to be here for me.
So in those two very significant relationships I am at peace. But I cannot say I am at peace with the thought of losing Parker. Can we ever be at peace with that? I am at peace with the knowledge I have put him into God's hands. That is where Parker is the safest. Thy will be done..... Once again, God, can your will please be the same as mine?
Yesterday I met a 95 year old woman who lives in Charlottesville, VA. Her son is a Volunteer in this ICU waiting room. He used to live with his wife in Woodmoor, the quiet subdivision right behind the florist where I work in MD. In fact, he was one of my customers before he and his wife moved down here about 8 years ago. His wife died in this hospital and since then he has come every week to volunteer his time, to give back. It has been on my mind, how can I give back when this is over? I am sure God will show me the way.
Anyway, so the 95 year old woman was sharp as a whip. She was waiting to take her son to lunch, and was reading a book on Mayan spirituality. It was written in the Mayan language, the name of which she allowed to roll off her tongue in the most lovely way. Her husband, who is deceased, was an artist. They lived all over the world, had such very interesting experiences. Her son, the volunteer, is retired from U of MD, now teaches through U of MD University College, the online college. He teaches science. He also lectures at UT. I really wanted to introduce him to James, but they left before James came back.
The 95 year old mother gave me her contact information. I am going to take her to see the new educational wing at Monticello, which they are just opening up, when I get home and life returns to normal. "Normal," by the way, has been redefined.
Parker's surgery is in a few hours. Please continue to pray. This feels like the last big hurdle, but probably the biggest of them all.
I love you Parker.
P.S. The photo is of what we now refer to as The Steveson Wing in the ICU Waiting Room. This is where we eat, sleep, and wait.
Monday, April 20, 2009
Magic of The Moment
I said I felt hopeful, now I am adding "cautiously optimistic" to that statement.
Dr. Morrison, the Critical Care Specialist who is consistently the most grim and serious, and scares me more than the others, actually smiled this morning! He called me to come down to talk to him. I was standing right behind him, waiting to go in to see Parker, and I am grateful I didn't hear the page because it would have caused me a heart attack. After his assessment I said, You seem more optimistic about his prognosis today, am I reading you correctly?
Dr. Morrison gave his version of a smile, looked into the room and said, Well instead of thinking minute by minute, we are thinking more long term now.... for instance, how long before we can get him off the ventilator, how long he'll have to have the antibiotics, things of that nature, which are all positive signs.
Last time I was dancing the Parker-Is-Going-To-Get-Better Dance I was crushed within hours. Hence the "cautiously optimistic" statement above.
I want to dance, I want to laugh, I want to cry tears of joy. I want to hold his hand and talk to him, and hear him answer me. I want to know he knows I am here, I want to be sure he knows his Dad has been here and read him the letter John wrote before he had to leave. I want him to know that his brother is sleeping in the League House room after a night on duty in the waiting room. I want to tell him the sun is shining outside again, and I saw some bluebonnets, and Dustin wants to take him to play golf, and his friends want him back at work, and his job is safe and I am here and will stay until he is well. I want all those things, and no doubt HE wants all those things, too. But he isn't ready just yet. So I am telling you, and when I can tell him, we will dance together. We will dance the victory dance.
Parker's temp is still slightly high, 99.7, which doesn't even come close to the 104 of last Tuesday. He had been breathing on his own again for a few hours this morning, but they reduced his sedation to about half what it was in order to be sure he was still responding to their commands (he was) and had to put him back on almost full support. Whenever they reduce his sedation, he starts fighting the breathing tube. When I first turned that corner and was waiting to go in, I heard his nurse today, Greg, talking to him.
Work with me buddy, open your mouth so I can put the block back in.... It's going to help you keep breathing. Come on Parker, help me out here.
Greg stayed very calm and apparently was able to get Parker to do as he asked. Nurse Katie told me when he spit it out last night and she was trying to get it back in, he shook his head hard from left to right and scrunched his eyebrows together, like a little kid. But, as we already know, she discovered the calmer she was, the better Parker was, too.
He still has the massive infection, but his white cell count is coming down close to normal, meaning the antibiotics are doing their job and his body doesn't have to fight as hard to get well in that one area of his health. He is holding his own as far as his heart is concerned, blood pressure has remained stable for several days now, his heart rate, although still high for a "normal" human, for someone as sick as he is, it is relatively low, in the 118 to 122 range.
He still gets that red rash spontaneously, which no one can figure out, but Greg said they were aware of it and were watching it. He had to change the dressing on the vac-pac sponge-abdominal-suction thing which got Parker quite agitated because of the pain. They want to get him off the pain meds he is on now so he can be fully weaned off the ventilator by the end of the week (cross all finger, cross all toes, pray, dance in the rain, whatever it takes!)
The next big hurdle is his 4th surgery tomorrow. They have to go BACK in and sew the mesh thing into the muscle wall (I think that's how it is happening ... information overload) and the doctor has to stitch from far outside the area where his abdomen is cut open to try and pull it together. There was so much fluid in his abdomen before they drained it that they are having difficulty pulling it all together again now.
I don't want to think about tomorrow's surgery until tomorrow. I want to relish this moment of hope and milk it for all it's work.
My sister said, Don't miss the magic of the moment by focusing on what's to come, so that's what I will do. It is a magic moment.
Dr. Morrison, the Critical Care Specialist who is consistently the most grim and serious, and scares me more than the others, actually smiled this morning! He called me to come down to talk to him. I was standing right behind him, waiting to go in to see Parker, and I am grateful I didn't hear the page because it would have caused me a heart attack. After his assessment I said, You seem more optimistic about his prognosis today, am I reading you correctly?
Dr. Morrison gave his version of a smile, looked into the room and said, Well instead of thinking minute by minute, we are thinking more long term now.... for instance, how long before we can get him off the ventilator, how long he'll have to have the antibiotics, things of that nature, which are all positive signs.
Last time I was dancing the Parker-Is-Going-To-Get-Better Dance I was crushed within hours. Hence the "cautiously optimistic" statement above.
I want to dance, I want to laugh, I want to cry tears of joy. I want to hold his hand and talk to him, and hear him answer me. I want to know he knows I am here, I want to be sure he knows his Dad has been here and read him the letter John wrote before he had to leave. I want him to know that his brother is sleeping in the League House room after a night on duty in the waiting room. I want to tell him the sun is shining outside again, and I saw some bluebonnets, and Dustin wants to take him to play golf, and his friends want him back at work, and his job is safe and I am here and will stay until he is well. I want all those things, and no doubt HE wants all those things, too. But he isn't ready just yet. So I am telling you, and when I can tell him, we will dance together. We will dance the victory dance.
Parker's temp is still slightly high, 99.7, which doesn't even come close to the 104 of last Tuesday. He had been breathing on his own again for a few hours this morning, but they reduced his sedation to about half what it was in order to be sure he was still responding to their commands (he was) and had to put him back on almost full support. Whenever they reduce his sedation, he starts fighting the breathing tube. When I first turned that corner and was waiting to go in, I heard his nurse today, Greg, talking to him.
Work with me buddy, open your mouth so I can put the block back in.... It's going to help you keep breathing. Come on Parker, help me out here.
Greg stayed very calm and apparently was able to get Parker to do as he asked. Nurse Katie told me when he spit it out last night and she was trying to get it back in, he shook his head hard from left to right and scrunched his eyebrows together, like a little kid. But, as we already know, she discovered the calmer she was, the better Parker was, too.
He still has the massive infection, but his white cell count is coming down close to normal, meaning the antibiotics are doing their job and his body doesn't have to fight as hard to get well in that one area of his health. He is holding his own as far as his heart is concerned, blood pressure has remained stable for several days now, his heart rate, although still high for a "normal" human, for someone as sick as he is, it is relatively low, in the 118 to 122 range.
He still gets that red rash spontaneously, which no one can figure out, but Greg said they were aware of it and were watching it. He had to change the dressing on the vac-pac sponge-abdominal-suction thing which got Parker quite agitated because of the pain. They want to get him off the pain meds he is on now so he can be fully weaned off the ventilator by the end of the week (cross all finger, cross all toes, pray, dance in the rain, whatever it takes!)
The next big hurdle is his 4th surgery tomorrow. They have to go BACK in and sew the mesh thing into the muscle wall (I think that's how it is happening ... information overload) and the doctor has to stitch from far outside the area where his abdomen is cut open to try and pull it together. There was so much fluid in his abdomen before they drained it that they are having difficulty pulling it all together again now.
I don't want to think about tomorrow's surgery until tomorrow. I want to relish this moment of hope and milk it for all it's work.
My sister said, Don't miss the magic of the moment by focusing on what's to come, so that's what I will do. It is a magic moment.
Sunday, April 19, 2009
On My Own
Let me start by saying how touched and moved and comforted I am by the generosity and kindness of others. Someday, WHEN Parker can hear and understand what I say, I will tell him how the spirit of friendship and love has lifted me up, so many times, and made it possible for me to stay here with him. There is no other option for me, I will not leave his side. But a little of the burden has been lifted and for that I am so grateful.
When I leave the ICU waiting room there are two hallways and three turns to make before getting to his room. There is a certain point that I reach, each time I walk down those halls, where my heart starts racing and I listen more intently. I am listening for the sound of crisis. The sound those machines make that start a heart back up. Or the sound of nurses speaking quietly but with an urgency that means whomever is in that room is in trouble.
I always made John go first. But John had to leave today, so I went down that hallway alone. I know it was infinitely harder for John to leave than it was for me to walk alone.
The first time I went the nurses were hovering over Parker. Nurse John looked up and said they were taking out the central line. I can't bear to see Parker struggle against the ventilator when he starts to wake up, and the nurses know this, so he suggested I come back in ten minutes.
I waited twenty. Just in case. I know stress plays a huge role in someone's health and recovery. The last thing I want is to add more stress in his room, so I am very, very careful to try to calm myself from the very center of my being before going in.
It was good news when I went back. Good news in that not much has changed. He's been breathing on his own for about 6 hours now. His breathing is very labored, so they will turn the ventilator on from 7-9 to let his body rest. It is very difficult to start your lungs up again once they are used to the ventilator, which is why he will get a trach tube the end of the week if he isn't off it yet.
His temp was still hovering around 100. They drew more blood to see if the transfusion they gave him yesterday helped. His blood pressure was good, his heart rate still high in the 120's but that is good for him. His HR hasn't been under 106 since this started and that was only once for about 15 minutes. He had already pulled out the tube coming from the left side of his body, so the tube coming from the middle and the one on the right are now sealed to his skin with saran wrap looking stuff. They just took out the central line (did I already say that?) so his neck is really red. But he felt serene, even with the labored breathing. He seemed peaceful, like he knew that is his job right now.
It is a gorgeous day today. I forced myself to leave and run a couple of errands for essentials and it did wonders for my mind. The sun is shining, there is a lovely breeze, it is about 70 degrees with the blue skies you only see in TX. Parker would love to be outside on a day like today. His boss said when Parker gets well he wants to give him his first set of golf clubs and teach him how to play.
Get well Parker! It's time now please!!!
When I leave the ICU waiting room there are two hallways and three turns to make before getting to his room. There is a certain point that I reach, each time I walk down those halls, where my heart starts racing and I listen more intently. I am listening for the sound of crisis. The sound those machines make that start a heart back up. Or the sound of nurses speaking quietly but with an urgency that means whomever is in that room is in trouble.
I always made John go first. But John had to leave today, so I went down that hallway alone. I know it was infinitely harder for John to leave than it was for me to walk alone.
The first time I went the nurses were hovering over Parker. Nurse John looked up and said they were taking out the central line. I can't bear to see Parker struggle against the ventilator when he starts to wake up, and the nurses know this, so he suggested I come back in ten minutes.
I waited twenty. Just in case. I know stress plays a huge role in someone's health and recovery. The last thing I want is to add more stress in his room, so I am very, very careful to try to calm myself from the very center of my being before going in.
It was good news when I went back. Good news in that not much has changed. He's been breathing on his own for about 6 hours now. His breathing is very labored, so they will turn the ventilator on from 7-9 to let his body rest. It is very difficult to start your lungs up again once they are used to the ventilator, which is why he will get a trach tube the end of the week if he isn't off it yet.
His temp was still hovering around 100. They drew more blood to see if the transfusion they gave him yesterday helped. His blood pressure was good, his heart rate still high in the 120's but that is good for him. His HR hasn't been under 106 since this started and that was only once for about 15 minutes. He had already pulled out the tube coming from the left side of his body, so the tube coming from the middle and the one on the right are now sealed to his skin with saran wrap looking stuff. They just took out the central line (did I already say that?) so his neck is really red. But he felt serene, even with the labored breathing. He seemed peaceful, like he knew that is his job right now.
It is a gorgeous day today. I forced myself to leave and run a couple of errands for essentials and it did wonders for my mind. The sun is shining, there is a lovely breeze, it is about 70 degrees with the blue skies you only see in TX. Parker would love to be outside on a day like today. His boss said when Parker gets well he wants to give him his first set of golf clubs and teach him how to play.
Get well Parker! It's time now please!!!
Critical Care
We just spoke to the Critical Care Specialist. He scares me.
He is still very, very sick. He is far from out of the woods.
The pancreatitis is still raging, his bone marrow isn't making blood so whenever they take blood out they have to replace it with another unit, he has the blood infection, the VRE bacteria, and on and on and on.....
On the positive note, his kidneys are working, his heart is maintaining itself and he is, as of an hour ago, initiating each breath on his own.
Keep working Parker, you've got a long way to go!
We asked him what positive steps we should be looking for next. He looked at me like I had two heads and I said, As the parents, we have to think positive, we cannot afford to think otherwise, and we just want to know what the next good step will be.
Getting him off the ventilator will be the next step in the right direction.
As my sister-in-law Liz wrote to me, baby steps have a whole new meaning.
He is still very, very sick. He is far from out of the woods.
The pancreatitis is still raging, his bone marrow isn't making blood so whenever they take blood out they have to replace it with another unit, he has the blood infection, the VRE bacteria, and on and on and on.....
On the positive note, his kidneys are working, his heart is maintaining itself and he is, as of an hour ago, initiating each breath on his own.
Keep working Parker, you've got a long way to go!
We asked him what positive steps we should be looking for next. He looked at me like I had two heads and I said, As the parents, we have to think positive, we cannot afford to think otherwise, and we just want to know what the next good step will be.
Getting him off the ventilator will be the next step in the right direction.
As my sister-in-law Liz wrote to me, baby steps have a whole new meaning.
Tuesdays
I just went in to see Parker after sleeping at the Seton League House next door. It was scary to be away for the night, even though it is literally a 5 minute walk and John was sleeping in the ICU waiting room. But our favorite nurse was here, Audra, and she has a very calming effect on Parker's room.In ICU the nurses only have 1-2 patients, depending on the need of the patient. Parker is still considered CCU and has always had one nurse to himself since he's been in here. The nurses sit at stations right outside the room, which has glass doors that slide open in a hurry if needed.
Parker has about 18 different machines going on at all times. The computer screens where the nurses sit will show different graphs like his temperature, his white cell count, his breathing, every single thing is documented and then laid out on a graph on the computer. The Critical Care Specialist showed me his white cell count graph one day. The peak day being at 44,000. That was Tuesday, April 14th. I've always been fond of Tuesdays, I'm not sure why. But now Parker went into the hospital on a Tuesday, and almost died on a Tuesday. So in my mind, there is only one way I can think of this. He will be better on Tuesday.
Being here in this situation this long makes you go a little crazy. For instance, I carry around a little tiny stuffed hamster I had sent to Parker when I was home for the five days in between hospital visits. He had laughed at it when I put it next to his bed upstairs. When they came to get him and take him to ICU, then to surgery, I grabbed it off the table and held it throughout the night. And the next day when he almost died. And that night when he heard James's voice and knew his Dad was here and I thought he might be a little better. And now, Critter goes everywhere with me. Dr. Garcia always looks at him in my hands and smiles. He's never asked about him, he must know Critter is a talisman. But that's the kind of weird thing you do in this situation.
Sorry Critter, I did NOT mean you are weird!
Parker is resting right now. Audra said they were going to give him a trial coming off the respirator about 7:am, which is in ten minutes. His temp is still slightly high (100.5, which isn't even close to what it was last Tuesday, over 104), and he has had some moments of experiencing some pain over the night, but Audra has kept on top of his pain meds throughout the night. He does have a staph infection at the site of one of the arterial lines (did I say that right?) which I know isn't uncommon, so they will change that line out soon. He is already on the antibiotic that fights that, so Audra assured me it was something to take note of but nothing to get myself worked up about. I pray she is right.
My hope for today? That Parker continues to rest as he has overnight. And of course, that he doesn't turn in the wrong direction again. He is coasting for now, and that is okay. He must be so tired.
I love you Parker.
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