Lesson #1

Lesson #1 is: Don't let yourself get run down and sick, because the patient you love needs you to be strong.

I stayed at the hospital last night in the recliner in the waiting room. I wasn't feeling 100% confident in Zhan, his nurse. Don't know why really, but in retrospect it probably has to do with my being overwhelmingly tired and cranky more than anything else.

By 6:am this morning I knew I was going to be sick, so I called James to come help me get home to our little room at the League House. Within minutes I was so sick to my stomach I felt like a ten ton boulder had rolled over me and was squeezing my body dry. I have slept off and on all day. John has been in touch with today's nurse, Rob, and James just went over to see Parker, too.

Temp down to 100.3 (Yea!!!), BP just about as normal as you can get, and heart rate still in the 120's, but for a guy Parker's size that could be his version of normal. White cell count down to 10.8!!!! Anxiety level lower but not gone. Still having to give him two units of blood a day, but a friend emailed me and said when her mother had this VRE bacteria, the antibiotics they use to fight it can cause a temporary reduction in bone marrow production of blood. I have to remember to ask the doctors about that.

James got to/had to witness a few of the things that I see each time that make me go crazy. It's like when you have a brand new baby and some nurse comes and pokes his toe with a needle and squeezes and squeezes until a drop of blood comes out for some test they have to do. You want to kill the person hurting your baby, who is screaming bloody murder and you just know is thinking (in his undeveloped mind) that you have abandoned him.

First, the nurses have to take this long tube that goes inside the trach and push it into the lungs, then pull it out. Parker's face scrunches up and he truly gets a "tapped wild animal" look about him. His stomach bunches up and you just know he's going to pop that sponge out and his guts are going to fly across the room. Then they have to squirt water down into his lungs to make him cough. That's extra special. More fear, "I'm dying and you aren't saving me" looks. Then he mouths something to the nurse and in my paranoia (because it is all about me) I think he's telling them to get me out of the room. :-(

However, James was rewarded when he told Parker he loved him and Parker squeezed his hand four times. I love you too.

That's all I can write tonight because just sitting up this long has worn me out and I have to reserve energy so I can go see him at 8:pm. I may end up staying here and not going, but the idea of that is still so scary and foreign and my mind plays tricks on me and suggests something bad will happen if I am not there.

However, he has improved today and I only saw him once at 6:am, so maybe he really is telling them to get me out of there. :-)

Post Surgery Update

Another long day. Very, very exhausted. Surgery went fine, post surgery is a little stressful. It will take a couple of days for Parker to begin to relax with the trach tube in his wind pipe. He doesn't have any idea of anything that has happened, so he was getting pretty agitated tonight. And frightened. The nurse, Zhan (pronounced Jan), said sometimes the Adavan he has been taking for anxiety will cause hm to be more anxious when he comes out of it, so she is reluctant to give it to him.

I tried to explain to him that he had been through a lot and he was in the final steps toward recovery (a generous exaggeration, but I thought maybe I could will it to happen by saying it to him) and if he could stay quiet for a couple more days all that stuff would be coming off him. Sometimes he seemed to understand, other times he turned from me and pushed my hand away.

I am going to try and get some sleep in my chair-bed in the waiting room.

Tracheostomy vs Tracheotomy

I'm having trouble explaining the difference, but when I say he is having a tracheostomy today, that is correct. If anyone is able to get a definitive answer (not from Wikepedia, thank you very much) please let me know. My usual sources of info (NIH, Mayo Clinic and Johns Hopkins web sites) are not giving me the information.

Parker had a really, really good night. His temp stayed below 100 with the cooling blanket, his heart rate was 112 this morning, BP still a little low for my comfort level but I am assured I only have to worry when both numbers are low, not just the bottom number, and when his heart rate also jumps high at the same time. Makes me nervous just writing about it.

I am waiting for the surgeons to come see me, then I will go back to see Parker before he goes for his SIXTH surgery in 12 days. For real. His surgery is at 11:30 Texas time. This surgery is supposed to be quick and easy, but I have learned there is nothing easy about Parker's case, so I am nervous and hopeful at the same time. I miss him so much.

Please God, please hold Parker up in your Light and help him heal. It is time.

I have made a little friend here, a little girl named Sara B. She told me her name that way like we were at an AA Meeting. Sara B. reached out to me with a golden smile when she saw I was sad. The truth is I think she saw Critter and wanted him, but she was very respectful and solemn when I explained he was my good luck talisman for Parker to get better. She colored a picture of an alligator for me to give him when he is well. I have asked the girls at work to send another Critter to me and I will send it on to Sara B. when it gets here, as she will be leaving tomorrow. I will miss the way she smiles at me when she comes into the ICU Waiting Room every morning, dragging her pink blanket behind her.

Take It Back

Paker has a fever tonight. Ugh. I'm not sure how that will effect his having the surgery tomorrow, but please, please, please continue to pray.

I love you, Parker.

Staus Quo

Thank you God for an uneventful day! Parker has stayed about the same most of the day. This is fabulous because A.) I needed rest from stress and anxiety to prepare for tomorrow's surgery, and B.) HE needs rest to prepare for tomorrow. I hope and pray and hope and pray that everything goes well with tomorrow's surgery, and that he is able to reduce his sedation enough afterwards where I can talk to him.

He still has a LONG, LONG way to go. He has so many tubes sticking out of his body, the huge open wound which still has to heal, so many things that can go wrong, or get infected or the list goes on and on and on. So again, thank you God for this day of rest. Please continue to pray for Parker, and think of us at 11:30am Friday, Texas time.

Oh, and P.S.? 95 degrees here yesterday!

Smiles

Yanos just told Parker to open his eyes, which he did. Then Yanos said, Look over there, look who is here with you Parker!

Parker moved his eyes to my side of the bed and one corner of his mouth raised up in a teeny-tiny crooked smile!

Good Start

Parker is still with us this morning!

I wrote everything below before Dr. Morrison (the Critical Care Specialist) called me to come down to speak to him. I got a SMILE from him!!!! He said, and I quote: Well he is certainly improved today as you can see from the heart rate and temperature.....

All that information is below, but the main thing he said was they will be performing a tracheotomy on Parker, probably tomorrow. Dr. Morrison doesn't think Parker will be able to come off the respirator successfully, and he has had the tube down his throat almost two weeks now. The tracheotomy will allow him to come off the sedation, he'll be able to sit up, and while he won't be able to talk well, he will be able to see me and hear me and respond and he will NOT have the panic of the ventilator tube down his throat!

I KNOW with every thing that a mother can feel, that is going to make the difference in his healing. I know once he stops using his energy to fight the vent tube his body will have the ability to get better. I don't know all the facts ... like how long it stays in, what the risks are, etc. But I know Dr. Morrison felt it would enhance his healing and make him more comfortable, so let's get it done!

Below is what I wrote before Dr. Morrison called me down:

I woke up at 3:30am and emailed Parker's Dad, asking him to call the nurse when he got up in the morning, then email me with the report of how Parker did overnight. I was only down the hall from him, but I couldn't make myself go down there to check myself first.

Remember that movie The Green Mile? That's what it feels like, walking that hallway toward his room, turning that corner and waiting to see the expression on the nurse and/or doctor's faces when I get there. The expression that I keep hoping will tell me he is on the road to recovery. For real. But is so frequently grim.

Last night Parker's temperature was still hovering around 105.3 (to be approximate) at 7:15pm. By 9:15 it had come down to 104.2, which gave me hope for the night. At that time Audra (his nurse) told me she was putting the cooling blanket on him and had started him on some Tylenol. I made sure his fan was still blowing like he likes it. His heart rate at that point was still around 160, which was better than 184 right before the surgery, but still cause for a lot of concern. His white cell count had gone from 16,000 just before surgery to 22,000 when Audra got to work at 7:pm. I went to bed ("bed" meaning my recliner in the corner of the waiting room) knowing there was nothing I could do, it is in other's hands now.

John emailed me back about 5:30am TX time and said Audra told him he'd had a good night. His heart rate was down, temp was down, etc. I didn't wait for the 6:am visiting time, I ran down that hallway as fast as my aching feet would let me (in the midst of all this my feet have both decided to have the most painful flare up of plantar fasciitis I've ever experienced!). Audra smiled when I got there. Parker's temp was 100 (with the cooling blanket over him ... but still!!!). His heart rate was in the 120'S! his blood pressure is still a little low, but that could be from the sedatives. Audra said he had the most restful night he'd had since he has been here. She said when he would wake up, he would look around, then allow himself to just go back to sleep on his own. Rather than fighting the restraints and the tube.

Yanos said his white cell count was down to 20,300. It is still really high but going in the right direction. Good news day!

The photo is of Critter, who I have already written about, and Angel, the figurine a stranger gave me yesterday when I thought I was losing Parker again, just before his 5th surgery in 9 days. :-)

Holding Him In The Light

Parker's temperature still hovers in the 104 to 105 range. His body is fighting this infection as hard as he can. Heart rate coming down slightly, blood pressure okay. Audra is giving him Tylenol and putting a cooling blanket on him. James is going back to remind Audra to please keep his fan blowing on him, he really likes that.

I know I have to turn this over to God. It is in His hands. I pray for Parker to be comfortable and not be afraid, and to heal as swiftly as he can. I imagine holding him in my arms, holding him up to the Light and allowing the healing to take place. Please continue to pray.

I love you so much, Parker. Please get well.

Out of Surgery

Parker is out of surgery. The drain from the original cyst had gotten clogged and had backed up, creating another new infection. The surgeon drained that, and as soon as he did his heart rate dropped back down a little. He cleaned everything out and went ahead and took the gall bladder out while he was in there. The surgeon, who is always an optimist, said he felt very positive about it, and if it happened again he would be able to go right back in and do it again. This time he put a larger drain from the pancreas, so hopefully that won't happen.

Parker is still imminently critical, but he did not go into cardiac arrest on the table and for now is sleeping. The wound on his abdomen is larger and swollen, but over time the vac-pac will pull that together to heal. Let's hope. While I was back there they were waiting for the PT people (I would have thought that meant Physical Therapist but apparently not)to come and attach the drain to pump the fluids out of the abdomen. I felt uneasy that it wasn't already done because that's what caused him to crash last Tuesday. But Yanos, his nurse who we really like, promised me he would see to it they came immediately.

Parker's temp was down from 105 to 101.4 already. I am happy for that but find I am losing my ability to be optimistic in all this. It has been six weeks and a day since this started. Every day I say to myself, Self, if he can just get past this point, or that point, or if they just get this done, or if his temp gets down, or his heart rate stabilizes, then I will feel like I can stay at the room for one whole day of sleep.

But we aren't there yet. We've got a long way to go. Please keep up your prayers.

I love you Parker.

Cardiac

They decided they couldn't risk the CT scan. Parker's temp shot up to 105 in about a half an hour. His heart rate was close to 180. They took him right back to surgery. The anesthesiologist came out before he went to tell us Parker is at great risk for cardiac arrest on the table. I went back to see him again and tried to comfort him. He was very frightened but couldn't talk because of the tube in his throat.

He is gravely ill. Everything feels surreal. This can't really be happening.

I love you, Parker. Fight, buddy, FIGHT!!!

Another Bad Turn

Parker has taken another turn for the worse. He is going off for a CT scan and possible surgery right now. The doctors were very grim. His white cell count shot up again, his heart rate sky high, fever up, everything pointing in the same direction as last week. Please continue to pray like you never have before.

I love you Parker.

Einstein's Theory

During the summer that Parker was 3 years old and I was pregnant with James, we spent some time at Bay Head with my family. One day I was looking out across the street to the ocean and I saw a Mom and her little boy walking along the side walk near our house. The little boy looked a little younger than Parker. One of his hands held firmly to his mother's as she struggled to adjust her beach bag, folding chairs, purse and a small cooler on her shoulder. The little boy's other hand gripped the string of one, single, bright red balloon.

The Mom was struggling because her son kept stopping to lift his head and watch the balloon floating above him. He would jerk his hand to make the balloon bounce, and then he would giggle. The Mom would tug on his other hand, re shift the weight of the things strapped to her shoulder, and move on again. One time when she tugged at him, the string slipped out of his other hand and the balloon went sailing away.

There was a brief pause before he wailed, like that moment when you hold your breath right before you get a shot. The little boys agony was very real, and very loud. I could have heard him sobbing even if my window had been closed. To him, the loss of that balloon was the most magnificent and painful thing that had happened in his short life.

His Mom put her things down on the side walk, gave him a hug, comforted him, and wiped his tears. There was nothing she could do to ease his sadness. She understood his pain, but also she knew the loss of the balloon was minor in the big picture of life. She knew by the time they got to the old fashioned candy store a half mile away the balloon would be forgotten and her son's young mind would be engaged with the colorful striped candies on the counter.

The little boy wailed, reaching his hands upward, as the balloon became a tiny red dot so high up the sky had turned from blue to white. His pain was tragically real, the Mom's demeanor calm, but realistic. After a moment or two she stood up, gathered up the chairs and beach bag and purse and cooler, slung them back over her shoulder, took her son's hand in hers and moved on down the road.

I remembered that scene this morning when I went in to see Parker. He had a somewhat restful night (I believe because Audra was his nurse), but is still fighting the ventilator. He was awake when I got there, so I dressed in my "infectious disease' garb and went in. I took his hand very quietly, squeezed three times and said I love you Parker.

I can't ever tell if my presence is helpful or a hindrance. I try to get myself centered and very quiet and calm before I go in so I can have a peaceful effect on him. This morning Parker looked at me with a pathetic pleading in his eyes that clearly said, Please help me!

I know how badly he wants that ventilator out. I talked quietly to him and told him if he allows himself to sleep through this we could get it out much faster. He squeezed my hand tight, then pushed it away and kicked his feet, turning his face away from me. I had let him down.

Fortunately, although that was incredibly painful, I am able to see the big picture. I know it is there to help him breathe and breathing keeps him alive ~ the ultimate goal. So I quietly told him, It's okay Parker, I understand, I know you love me and I know how hard this is ~ I love you too.

He closed his eyes, took my hand again, and tried to go back to sleep.

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.

Perspective

Parker's 4th surgery is over, he is resting comfortably. Once again the Critical Care Specialist wouldn't give me a smidgen of hope, it's like he can only dole out good news once a week. But the surgeon, polar opposite of the CCS, was very optimistic and said he should not have any residual problems as a result of this procedure today (except the hernia, which I'll take over what we thought on this day one week ago....).

Here is what they did in the surgery today (don't read this if you are squeamish):
Parker's abdomen has been open for one week with a sponge thing called a vac-pac which kept it sterile and gently tried to pull the flesh together slowly over time. This was because he had what is called Abdominal Compartment Syndrome(ACS. They originally had to go in and open him up last Tuesday to relieve the pressure the building fluids were putting on his organs, causing them to shut down, after the first surgery Monday night. It is something that is done often in shock trauma situations. Surgeon told me today that he "used to do them 18 years ago" during his residency. Glad I didn't know that before today.

Because Parker has been in so much pain, and because when he coughs in his attempt to get the ventilator out of his throat his guts were bulging out (words of the surgeon), they went in and put a piece of mesh along the muscle wall to create a new fabric muscle. Then they took 12 tiny pieces of plastic, laid them on top of his abdomen around the opening, and stitched from above those pieces, through his flesh and muscle, all the way down to the mesh, then back up and out and around. The plastic pieces serve as reinforcements.

They did this to hold it all together. Parker is known as the biggest cough er the hospital ever saw. Over time the flesh will grow together, but the muscle wall won't and he will have a hernia which will require surgery sometime down the road.

But thank you God that there will probably be a "sometime down the road."

The next 24 hours are a bit critical, watching closely to be sure the area doesn't get infected, watching to be sure the fluid doesn't start building back up again, all kinds of things. But he was resting and quiet and has made great progress over the past week.

Next step is to try and get him off the ventilator. They won't do any weaning today because he will be in a good bit of pain and will need to be sedated (which lowers respiration) but hopefully over the next few days they will have some success there and we can avoid having the tracheotomy.

Please continue to pray and send positive energy his way. Thanks.

On another note, there is a family who has been "living" here in the ICU Waiting Room with us since last Thursday. There is a mother, a father and a fiance' of a 30 year old girl who had spontaneous brain bleed last week. Cause unknown.

Today the Chaplain and their Neurosurgeon came and took them into The Room (the one you go in to when you are getting bad news because it offers you some privacy from all the people milling around). The mother came out a half hour later, the father and the fiance' could be seen through the open door, sobbing, their heads in their hands. Although the girl has been somewhat responsive over the last 24 hours, they said she will never be the same. She will live, but she will require 24 hour a day care for the rest of her life.

At this point it feels as though Parker will live (barring any complications over the next 24-48 hours). I feel so blessed.

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.

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.

Hope

I feel hopeful today.

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!!!

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.

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.