Sunday, May 24th Tears and Fears

As I write this the tears are rolling down my face.  I spoke to my mom earlier today about a doctor's visit.  While our conversation was not at all emotional, the impact of what we talked about has sunk in now that I am alone and quiet.  A young nephrologist (kidney doc) had asked if a nephrectomy (removal of the kidneys).  When Clayton went into cardiac arrest, he was only days away from having the pre-op appointment for the nephrectomy.  Right now, Clayton is not strong enough for the surgery.  He has been in a plateau in his recovery.  This has been emotionally difficult for all of us.  Mom talked about how it is difficult to manage his fluids and will continue to be until he gets a transplant, again.  Before he gets a transplant, he needs to have the nephrectomy and he needs to get much stronger to do that.  Ironically, the kidney transplant would help him to heal and get stronger.  

Some background information: When a patient has a kidney transplant, the original kidneys are not removed.  Instead, the kidney is placed in the front of the body and the old kidneys are left in their locations.  For most patients, it is too traumatic to remove the kidneys and have the transplant.  The old kidneys usually are not harmful.  This is not the case for Clayton.  His kidneys had radiation as a an infant and are considered neurologically compromised.  As was his bladder.  In hindsight, for most of the doctors, a nephrectomy probably should have been done prior to Greg donating his kidney to Clayton.  His kidneys have been sending out random, mixed up signals since they had received nerve damage during the radiation.  The kidney that Greg donated (fondly called "Righty") was damaged when he had an episode of flash pulmonary edema in October of '08.  It continued to make urine but Clayton needed to start dialysis because Righty could no longer make high quality urine.

Insight...

The following is from Oprah.com. It is by a brain scientist who had a stroke.  She has been able to view what its like to have a brain injury from both angles.  I was lead to it by http://thefightofmylife.blogspot.com.

Recommendations for Recovery: Forty Things I Need Most

By Jill Bolte Taylor

1. I am not stupid, I am wounded. Please respect me.

2. Come close, speak slowly, and enunciate clearly.

3. Repeat yourself—assume I know nothing and start from the beginning, over and over.

4. Be as patient with me the 20th time you teach me something, as you were the first.

5. Approach me with an open heart and slow your energy down. Take your time.

6. Be aware of what your body language and facial expressions are communicating to me.

7. Make eye contact with me. I am in here—come find me. Encourage me.

8. Please don't raise your voice—I'm not deaf, I'm wounded.

9. Touch me appropriately and connect with me.

10. Honor the healing power of sleep.

11. Protect my energy. No talk radio, TV, or nervous visitors! Keep visitation brief (five minutes).

12. Stimulate my brain when I have any energy to learn something new, but know that a small amount may wear me out quickly.

13. Use age-appropriate (toddler) educational toys and books to teach me.

14. Introduce me to the world kinesthetically. Let me feel everything. (I am an infant again.)

15. Teach me with monkey-see, monkey-do behavior.

16. Trust that I am trying—just not with your skill level or on your schedule.

17. Ask me multiple-choice questions. Avoid Yes/No questions.

18. Ask me questions with specific answers. Allow me time to hunt for an answer.

19. Do not assess my cognitive ability by how fast I can think.

20. Handle me gently, as you would handle a newborn.

21. Speak to me directly, not about me to others.

22. Cheer me on. Expect me to recover completely, even if it takes twenty years!

23. Trust that my brain can always continue to learn.

24. Break all actions down into smaller steps of action.

25. Look for what obstacles prevent me from succeeding on a task.

26. Clarify for me what the next level or step is so I know what I am working toward.

27. Remember that I have to be proficient at one level of function before I can move on to the next level.

28. Celebrate all of my little successes. They inspire me.

29. Please don't finish my sentences for me or fill in words I can't find. I need to work my brain.

30. If I can't find an old file, make it a point to create a new one.

31. I may want you to think I understand more than I really do.

32. Focus on what I can do rather than bemoan what I cannot do.

33. Introduce me to my old life. Don't assume that because I cannot play like I used to play that I won't continue to enjoy music or an instrument, etc.

34. Remember that in the absence of some functions, I have gained other abilities.

35. Keep me familiar with my family, friends, and loving support. Build a collage wall of cards and photos that I can see. Label them so I can review them.

36. Call in the troops! Create a healing team for me. Send word out to everyone so they can send me love. Keep them abreast of my condition and ask them to do specific things to support me—like visualize me being able to swallow with ease or rocking my body up into a sitting position.

37. Love me for who I am today. Don't hold me to being the person I was before. I have a different brain now.

38. Be protective of me but do not stand in the way of my progress.

39. Show me old video footage of me doing things to remind me about how I spoke, walked, and gestured.

40. Remember that my medications probably make me feel tired, as well as mask my ability to know what it feels like to be me.

5/21 Claytonstock

Thank you to everyone who planned and attended.  We really appreciate everything, especially all of the time, effort and money that John and Jared put into the event.  More thanks to come....I don't want to forget anyone!

Needing some love & encouragement...

Clayton has been feeling a bit blue.  He's at a stand still with his recovery and in no man's land regarding the next place that he will go to.  There was a little bit of hope that he'd go to St. Agnes again.  But, the hope is dwindling as it seems that insurance will not pay for there.  

He's also had frequent episodes of not being able to talk.  They have found that ativan helps him to be able to talk.  Nurses don't realize this and sometimes when he has a new nurse at night they hold it.  He wakes up not being able to talk.  This is the most frustrating thing for him because he has so much to say.  He can also tell that Max is scared when he cant' t talk.  He asked Mom for me not to come today if he comes out of dialysis not being able to talk.

If anyone is able to visit him, he is at the Hospital of the University of Pennsylvania in room 1483 on the 14th floor.  Mom and Clayte could use some smiling happy faces.

If you can't, please leave a message of encouragement for him at this  toll free #.

It is 800-606-0697.  You will be prompted for an invitation number which is 70435.

Thanks for calling

May 22nd-Rice krispies and A1

Clayton asked me for A1 and rice krispies the other day.  Dad went down to visit him today and brought them.  He's wanted rice krispies since he started to wake up from the coma.  It's funny how the simple things seem so wonderful when your life has been stripped bare.

I think that staying at the hospital has really started to take a toll on Mom.  She really needed a break.  I'm glad that Dad came down today and let her go out.  I hope her little break helped a little.

Clayton had a procedure today to put another line in his neck.  When he came back, he noticed that Mom had thrown away the flowers that were dying.  They were the ones that he had gotten for her at St. Agnes for Mother's Day.  He was sad because he had worked so hard to get them for her.  She asked me to bring some replacements down with me tomorrow.

Hopefully, I will be able to give them a break so that Mom can go home to be with Dad and work on some things together.  I feel so overwhelmed with planning the benefit, the changes at work and taking care of two kids.  I'm trying to maintain a little "normal" for them.  

Lately, I feel like "woe is us" and "why did this happen" to us.  I just feels so blue. 

Clayton will be released from the hospital, soon.  It looks like insurance does not want him to go back to St. Agnes since he's not on the vent.  He's really not quite strong enough for Moss or Bryn Mawr.  The last remaining option is skilled nursing (a nursing home).  If that's what's best, we'll need a place close to home with young people there.  Mom is so worried that he'll become depressed there.  She's putting so much pressure on making the right decision.  He can only go to a rehab once this year for about 37days.  Docs are also looking into removing his kidneys.  So, in addition to where, is the question of when.  Is before the surgery better or after or will they even follow through and take the kidneys out?  Where's the crystal ball when you need it?

5/19 Nothing is as strong as the love for a child...

I took some pics to share today at the hospital.  I wanted to capture Clayton enjoying real food.  I loved this photo.  My mom with her miracle boys.  She is being such a wonderful advocate and caregiver to Clayton.  Despite how much, she loves him, it has been really hard for her.  She has sacrificed herself and her life to give her son a chance at his own.  And this is not the first time that she has done this.  She says that this has been the hardest, though.  So many tough decisions to make for him and with him.

Clayton has been very worried about his little boy.  He wants him to be truly happy and prevent him from having the same struggles that he experienced.  It's hard for him not to be able to raise him, right now.  He also is acutely aware that his suffering is making his son suffer.

Enjoying a cookie.  He's really looking forward to that cheesecake, Aunt Kathy.

The first time that he's been able to bite something on his own.  Mom has been cutting up his cheeseburgers into bite size pieces.  He has to chew each bite 25 times, or speech says he can't eat! So he does count them!

5/18 Real food!

Great news, today!  Clayton passed the evaluation to be able to eat solid foods!  He was eating everything that was presented to him.  I thought that he might burst!  He was so excited to be eating solid foods.   He ate pork chops, green beans and rice and so much more! He was sending mom down the cafeteria to buy more food for him.

5/17 What a talker!

Clayton's tremors are very well controlled, today.  He's really talking a lot.  Max and I came to visit him.  He brought his book Diary of a Wimpy Kid to read to Dad.  While Max loves the book, he has difficulty reading more than the cartoon captions, so I read it to both of them.  It was nice to see both of them laughing and having a good time.  

He's got so much to say.  Since it takes him so long to get the words out, it takes a great deal of time to have a conversation.  He's so determined to make sure that people know what he's saying and that he's intelligent.  He speaks so properly.  It took us about a half hour to get out of the door because he kept talking.  This is happening to the doctors, too. Mom is saying that they seem to be avoiding coming in the room because he won't let them leave!  He keeps talking and talking!

Note: Don't tell Max any secrets!  I'll explain, later.  It's kind of funny. :0)

5/16 Grandmom visits again!

We had a car full!  Max and Violet rode into the hospital on her mini car and Aunt Franny pushed Grandmom in on her wheels.  We were quite a sight going through the hospital.  Grandmom brought mom some lazy peirogie.  Clayton was really, really, really tired.  He ate some cream of wheat which made Grandmom feel much better that he's eating.  He had dialysis, so when he went downstairs for that, we went and had some lunch with Mom.  We got to ride down the service elevator and go into the dialysis unit with him.  He was sleeping so soundly that he didn't even notice us saying good-bye.  I slid open his eyeball and he kept on sleeping.  Max thought this was so funny!  When he woke up after dialysis, Clayte asked where Max was.  He didn't remember us trying to say good-bye.

5/15

5/14

5/13

5/12

5/11

5/10

Mother's day

5/9

EEG kidney ultrasound

5/8

Back to HUP 10 pm 

maybe 2 drugs interacting

5/7

tremors very severe (fever)

5/6

passed fluroscopy for liquids and soft foods

5/5

Couldn't talk in am, severe tremors, capped

5/4

Moss ok talked to dad about fixing certain cars capped

5/3

capped UTI meds started

5/2

capped

5/1

capped

4/30

capped 12 hr.

4/29

capped 12 hr.

4/28

4/27

Every day getting stronger.  Put weight on his legs with support.

4/26

started predrisone again

4/25

kidney very tender

4/24

told Dad he was "improving"

4/23

4/22

sat up in chair capped 6 hr.

4/21

doing great with speaking

4/20

Valve

4/19

4/18

4/17

told john where street races both were

4/16

Trac collar 12 hrs.

4/15

asked where he was City of Philadelphia St Agnes Hospital

4/14

St. Agnes/trac collar

4/13

Juice/bopped Max on the head

4/12

4/11

4/10

squeezed hands

4/6

4/9

4/8

4/7

April 5th

April 4th

water

April 3rd

April 2nd

April 1st

March 29th Evidence!

Clayton's friend Zeke and his wife Gwen came today.  I was telling them about the comedy skits that Paul had brought for Clayte and how he started to smile.  I decided to record it with my camera.  I took one pic, too.  I love seeing the twinkle in his eyes, again!  It gives us such hope.

We were so excited to have evidence to show the doctors.  When we did show the film, it was still met with skepticism.  I guess it's hard for them to truly know what's a reflex and what is a reaction to something that he would normally respond to.

March 31st

Starting to wake up more... Lorrie asked Clayton to stick out tongue

March 30th

surgery

March 28th

Laughing with Paul

March 27th

Refreshed and refocused on the positive.

March 25th Time for a decision

Clayton's jerking continued through the night.  I didn't sleep much.  It was just too horrible to witness.  His jerking did decrease some through the night.  He was in so much distress that his jerking kept setting off the alarms.  When I did fall asleep, the alarms would go off and I'd be up, again.  

Every morning brings the doctors rounds and new bits of information.  Neurology came and the news was not good.  I was compelled to ask questions.  I had read enough online to know that the news would not be good.  I guess I just needed to hear it for myself from a doctor.  I was told that he had only a 1-3% chance of survival.  He appeared to be headed toward being declared to be in a constant vegetative state. I was trying to prepare myself for this but you can never be prepared. Only his brain stem was alive.  The signs that he was waking up were involuntary reactions, even opening his eyes.  Someone in a constant vegetative state seems to look through you instead of at you.   It looked like the rest of his brain no longer functioned.  This is one step above brain death.  Only involuntary functions are present.  The respiratory therapists had been telling us that he's breathing some on his own and there's hope of getting him off of the ventilator.

Hearing this while being alone with Clayton who was still constantly convulsing from the jerking, was the worst experience of my life.  I had just received devastating news and wanted to be with Clayton.  But, just holding his hand was so difficult.  The physical feeling of his convulsions paired with the internal feeling of pain was more than I could bare.  I just wanted to crawl out of my skin because it was so distressing.  The doctors and nurses told us that it was more painful for us to watch than for him to feel.  I comforted myself with the belief that with unconsciousness comes the ability to temporary "leave" your body to take a break.

I didn't know what to do with this knowledge.  Mom and Dad knew we needed a miracle and that things weren't good.  They know that he could be in a vegetative state because he wasn't waking up.  But somehow, this news seemed worse.  I kept calling them to see when they were coming.  I didn't want to alarm them and I didn't know if I should tell them or wait for the doctors.  I called Stacy and she decided to come to the hospital for support with all 3 babies and Andrea.  

Aunt Maria and Uncle Pete came and brought lunch.  They gave me a break.  While I was out the group of doctors for the floor came to do their rounds.  The news was everything that we had feared.  It was time to discuss what should happen next and the team was encouraging shutting off life support.  I remember hearing a doctor say, "this is disturbing to watch," when referring to his constant convulsions.  The team decided to put more medications back on board that had a sedative nature.  These were decreased or removed to assist with waking him up. The goal was to keep the convulsions at bay while using as little sedation as possible to allow him to wake.  The team wanted to bring up neurology to discuss everything with my parents.

When my parents finally did arrive, I had decided that I needed to tell them what was coming.  I felt that I would want to hear it first from a loved one.  My mom was starting to accept this.  My dad was still ready to fight the good fight.  None of us was willing to give up.  My aunt and uncle gave their support to the best of their abilities.  They have done a lot of healing and accepting the death of their own son.  They were able to offer a perspective of accepting a child's death.  My parents weren't ready to hear this.  

The three of us sat in the waiting room with Dr. Dan.  He told them what I had already heard and then discussed the options.  Clayton could live in a vegetative state indefinitely.  The hospital encouraged terminating life support.  We didn't want that because we knew that Clayton did not want that.  We came up with the decision that we would continue to give him time to wake up.  The doctor suggested coming up with a specific time frame for waiting.  If no improvement was made after maybe 3 months, then life support could still be terminated.  We wanted to continue to give him a chance to recover because people do wake up.  Mom and I were especially concerned about his soul.  Where is he, if he's not truly living in his body but not yet dead.  We didn't want his soul stuck on earth when his life in many senses was over.  It would be an torturous state to exist.

We did decided to implement a DNR (do not resuscitate).  If he went into cardiac arrest, again, we would let him pass and not continue the suffering.  In that event, we also wanted him to be an organ donor.  We knew that Clayton really wanted to pay the gift that Greg had given him forward to someone else.  While they might not be able to use his heart, kidneys or lungs, they could use eyes, skin and other organs that were not damaged.  Someone from Gift of Life was on the floor that day and we were asked if we wanted to speak to them.  We declined, it was too much, too fast, and all of his information was already downstairs in the transplant center.

We ended up speaking to the neurology team outside of his room.  They explained that based on their statistics, testing and experience, Clayton would probably not recover from his brain injuries.  They were very upfront and concise about what they knew and saw.  They also explained that their are elements that they don't understand about recovery including why some people wake up after years of being in a vegetative state.  There are still mysteries.

Mom, Dad and I all went home.  We needed a break.  I felt that Clayton was no longer with us because I felt his connection fading.  I didn't know if he was exiting as a relief from his suffering or if he was ready to die.  As time went on, I believed that he was ready to go to heaven and end his suffering.  It was just entirely too much to ask him to stay, even for Max's sake.  He was going through more pain and distress than anyone should.  I kept thinking about the fact that if he were a pet or farm animal, my family would have "ended his misery."  Because he was my brother, that was unthinkable.  It made me wonder which was the right thing to do.

No surprisingly none of us slept much.  Quite frankly, we hadn't slept much since he was hospitalized.

March 26th

Seizures

March 24th Signs of hope... and signs of death...

Our day started out on a positive note.  Yesterday, we contacted as many people as we could and asked them to pray.  All prayer helps and we've received prayers of almost every kind.  Well, the prayers helped!  Everyone that I had called yesterday with the sad news, I called back again!  He was showing signs that he was waking up.  He opened his eyes.  

Today is Aunt Franny's birthday.  She left him a tearful message in which asked for him to open his eyes as a birthday present to her.  He had already done it before she left the message!

Max, Aunt Franny and I went down to see Clayton.  By the time that we had gotten there, he had been continuously convulsing for hours.  The hope from the morning was diminished by the constant jerking.  I could see the pain and weariness on my parents' faces.  Mom, Max and I prayed the rosary as we gathered around his bed.  It was so beautiful and awful at the same time.  At times, I could barely speak and tears ran down my face.  I worried about what impact the was making on Max.

I offered to stay there.  Mom and Dad could drive my van home with the baby, Max and Aunt Franny.  They'd get some rest and come back in the morning.

When everyone left, I read to him.  I read the Alchemist which is a story about finding your purpose in life.  Doctors and nurses would pause at the door to listen.  When I realized that I was being watched, I'd look up and they'd feel self-conscious or say something like, "I wish I could stay to listen." 

 It seems like such a hard floor to work on.  Every day, we see families who are being told that their loved one with not make it.  It seems like there is at least one death on the floor each day.  As you watch families cry out in anguish, you feel badly for them and know that you could be in their shoes next.  Clayton's knocking on death's door and we are hoping that death doesn't answer because he's too busy answering their loved one's knock.  It's a horrible feeling that gives no one a sense of peace. 

At the same time, you get to know a few families well.  Without knowing their loved one, you pray for their recovery.  Comrades in a battle for the life of someone so dear to us.  You find yourself deeply caring for someone you don't know, because you've come to care for their loved ones.  This part of the floor is beautiful.

The staff on the floor are also beautiful.  They have been so kind, helpful, supportive and informative to us.  Clayton has been treated with dignity and kindness.  The doctors, nurses and therapists who work on this floor are truly special people.  We can never thank them enough for what they have done for our family.  Words fall terribly short.

March 23rd Awful news...

Awful news... Dad was alone in the room when the neurologist told him that it was time to pray for a miracle.  Clayton's EEG was showing signs that his brain was dying.  There's no sharp waves that indicate the thought processing of a healthy brain.  In their place are tiny waves that are barely there.  He's so close to having flat lines which would mean that his brain is no longer functioning.  It's just unthinkable that Clayton had a genius brain last week and may wake up with a simple mind.  We've speculated that maybe he wanted to experience both ends of the spectrum in one lifetime.  

I've tried to lift up my parents' hopes.  In part, because I don't want to hear the bad news.  I also know that hope, prayer, positive thinking and being proactive can all work miracles.  If we loose focus of that, the hopelessness creeps in and takes root.  I feel like I can't let that happen.

March 22nd The Elephant in the room

 Grandmom and Aunt Franny came down with Max and I to see Clayton.

I come home every night and look up things about being in a coma.  We are trying to do everything that we can to stimulate his senses.  We have his ipod that contains messages and music on it playing when no one is visiting.  Aunt Franny purchased scented and flavored chapsticks which elicit reactions from his taste, smell and sense of touch.  We have scented lotions to massage his fee and hands.  We are often holding his hand, talking to him, reading to him and praying with him.  We hug and kiss him and tell him how much we love him.  We hope he can hear all of this and knows how much we care.

Despite all of the positive things that we are doing, he hasn't started to wake up.  Our hope is fading but we are choosing not to notice.  It's the elephant in the room that no one wants to address.  We know that the longer it is that he doesn't wake up, the less likely it is that he will.  We also know that Clayton does not fit the typical protocol for anything.  He does not react typical to medications and even medical procedures.  His system is slow since he needs dialysis to clean his blood and it does not do as good of a job as a kidney does.  His digestive system is extraordinarily slow (he had a GI study that showed whole, undigested cheerios in his stomach 12 hours after he ate them).  So we are clinging to the hope that he will wake up extraordinarily slow.

March 21st Love & support in limbo land

Lots of family and friends came today to support us.  I brought Max down to see his Dad again.  the love and support that everyone has given to us is overwhelming at times.  People who we don't even know have donated money.  We can't even keep track of how many people are praying for Clayton.  It makes you realize the power of prayer.  

My parents have been taking turns staying with Clayton.  I'm glad that they do.  It is so difficult being in limbo land with him.  We want the best for him, don't want him to suffer and don't want to loose him.  It's all just so hard for us right now.  I tell him everyday, that we'll do whatever he wants us to do.  If he wants to still be here, then we'll keep fighting for his life, if he doesn't then we'll be okay.  We don't want him to suffer because we selfishly still want him alive.  

March 20th Hoping and Waiting

Clayton is warming up and we are eagerly waiting for him to start to wake up.  The doctors want to reduce the medication that's keeping him in a coma.  It's so hard to wait.  My mother is there at all times at the hospital.  No one will leave him alone for fear that he'll wake up with out us there.  We want to reassure him that he'll be okay.  Most of all we really, really want him to wake up.  The doctors say that the first few hours and days are critical.  As time passes, our chances of having him wake up slowly decrease.  

He's hooked up to so many tubes and wires and things.  It's so hard to believe that he was just tinkering in the garage the other day.  I so want to wake up from this nightmare but it's been several days.  The reality that it's not a bad dream is really sinking in.

I've been spending a lot of time with Max.  He comes with me to the hospital all of the time.

Andrea helped me set up a caringbridge website today.  It was such a good idea.  I have to post a lot on it, yet. 

Aunt Franny helped me set up a lifeonrecord 800 number to give Clayton encouragement.  Everyone is leaving him messages and I'm putting them on an ipod.  We play them for him when there's no visitors.  

I'm educating myself on comas.  They say to stimulate the senses as much as possible.  They can hear you, too.  I hope the messages give him comfort and encouragement.  

Everyday, I tell him, that he needs to show us what to do.  We'll fight the good fight to keep him alive if he chooses to stay here with his.  As long as he's here, we'll do our best.

March 19th Warming up

Clayton is starting to warm up.  It takes a long time. It's done very slowly to ensure that the patient is comfortable, safe and healthy.  Too quickly would shock the body.

Max spend the day with me.  We tried to go to school but he just couldn't do it.  It was heartbreaking.  I was able to get him to go into the school but he just wouldn't go to his classroom. One of his friends, Paulina came in and saw that he was crying.  She wanted to know why and was comforting to him.  She tried telling a story of when her daddy went to the hospital because he broke his arm.  Her daddy was bringing her in and quietly explained that it's just not the same.   I left him in the care of Mrs. LaRocca, his assistant principal.  She would call me if they needed me to pick him up.  It was hard to leave him when we were both in tears.  He hadn't gone to school since Monday due to his cold sores and I didn't want him to fall behind.

Violet and I went to the flower shop to visit with Gram.   I had a feeling that he wouldn't do too well.  I can't imagine being seven, in first grade and facing that my dad could be dying in the hospital.  

Mrs. LaRocca called me while I was at the flower shop.  He wouldn't go to his class.  

When I arrived his teacher, Mrs. Strockbine was trying to convince him to go to his class.  She was firm but kind...and didn't have success.  They agreed that he'd go tomorrow and make up all three days worth of work today.

So, we went home and got caught up.  Grandmom and Aunt Dolores came over for lunch.  Aunt Dolores helped him finish up his work.  It was quite tough!

March 18th A chilly day

Clayte is still cold.  It's hard to see him asleep and so cold.  I can't imagine what he's feeling.  To be so cold after so much trauma.  I don't want him to be afraid.  I hope that he can feel the warmth of all of our love and the hope that we have that he'll make a full recovery.  His hands feel so cold, it makes me think about our worst fear.  I want to hold his hand but I just can't touch him.  I know it's helping him but this is just too much to handle.  

Hypothermia and Seizures

That night was a difficult one for everyone.  We couldn't believe what had happened and were anxious to get treatment underway.  The problem was he continued to have seizures.  They had started in the ER at GVH.  They couldn't start the hypothermia treatment until the seizures subsided.  The sooner the treatment was given, the more likely the person was to have a full recovery.  

The treatment entailed cooling his chest cavity and the organs in it to just above freezing.  This enabled the body to slow down.  The brain was given a break to heal and get sufficient oxygen.

The Big Chill

The treatment that was recommended for Clayton was called hypothermia.  Here's a link to some info. about it:  http://www.wral.com/news/local/story/1055492/

  http://altmedangel.com/hartcool.htm

Visiting the doctor

I took Max to see Doctor Davis for his cold sores.  He spoke fondly of Clayton but knew that the outcome for him looked grim.  He had talked about Clayton's mechanical skills and his intelligence.  Max got to get something to clear up his mouth quickly.  It eased the worry about causing his Dad further harm.  Max has always gotten cold sores. :(  

Then it was time to go back to his Mom's house.

How do you tell Max?

As reality set in, we knew that we needed to go to get Max.  He hadn't gone to school that day since he was recovering from a cold.  Dad broke down at the thought of what do we tell him? I had been talking to Max about his Daddy's fragile health since Clayton went into renal failure, several years prior.  He sometimes would lay down next to met at night and say "I'm worried about Daddy going to heaven, soon."  With tears gently rolling down our checks onto our pillows, we'd talk about how we felt.  Max seemed to find comfort in the darkness, the warm comfort of the bed and knowing that he wasn't alone in how he felt.  I didn't hide anything from him about his Daddy's health and the possibilities, only put it in words that he could understand.  He often would ask questions that I was not able to answer.  When this would happen, I'd say that only God knows and you will only find an answer in prayer.

I called Melissa and explained that Max needed to go to the hospital to see his Dad.  He wasn't doing well.  I went to pick him up, moments later.  Max got in the car and I started to pull away.  I started by saying, "Max, I have to talk to you about your Dad."  When I pulled over and had him climb up to the front seat, tears welled in his eyes.  He felt my sadness and knew his Daddy was in trouble.  I explained that his Daddy had trouble breathing this morning.  Grandma and Grandpa took him to the hospital.  When his lungs filled up with too much water, his heart had to work harder to get air to his brain.  This made his heart stop working.  When his heart stopped working, his brain didn't get air.  Your brain needs lots of air.  If your brain doesn't get enough air parts of it stop working and won't ever work again.  Sometimes the parts that still work, can learn to do what the parts that aren't working used to do.  The doctors don't know how much of his brain will be working.  Since your brain tells all of your body what to do, his body might not be able to work any more.  

Right now, we need to remember that God will help us and we need to pray for Daddy.  Because Daddy is very sick, we don't know what will happen.  He might be able to stay with us for a while longer.  If that happens, that's good for us, because we really want to keep him with us.  Your Daddy might go to heaven.  If that happens, it will be so sad for us because we love him so much and will miss him terribly.  But, it will be good, too, because Daddy will go to heaven and no longer will be sick.  He'll be in paradise where everything is perfect and wonderful.  

As I spoke, the tears poured out of our eyes.  Max repeated what I had said and asked questions.  I explained that Daddy was sleeping but we would go see him.  We both cried our way to the hospital knowing that this might be time for Max to say "Good-bye" to his Daddy.  He adored his father and wanted to be just like him.  He would always say, "My Daddy ..." this and that.  In preschool, he actually got in a fight over whose Daddy is the strongest and toughest.  

The two of us went into the chapel where our family had gathered.  The charge nurse was a classmate and longtime friend of my mother's.  She explained what was going on to Max and said that she's go see Daddy with him.  Max decided that he'd rather go to the cafeteria to get a drink.  It was all too much for someone so young.

Family and friends began to fill the waiting room.  It had been decided, early in the morning that he should be transported to the Hospital of the University of Pennsylvania where his doctors and specialists could help him.  We all waited and watched for the helicopter to land.

Finally, when it arrived, I gave Max the opportunity to go see his Dad.  Grandmom Sitko, Aunt Kathy and the charge nurse, Terri gathered around Max and his Father.  We all told Clayton how much we loved him, how much we supported him, prayed with him and encouraged him to fight to live and get better.  Clayton's body was convulsing and it was difficult to watch.  Our visit was brief and we gathered by the window to watch for the ambulance to transport him to the helicopter.  The hospital staff say its a 10 second ambulance ride!

There was not a dry eye in the room as we all witnessed this little boy watching his Daddy be taken to one of the best hospitals in the nation.  We all clung to the hope that they could save him but knew the odds were not in his favor.  

By 3 pm, Clayton was flying a 9 minute trip to HUP, the crowd was going home and plans were being made to join Clayton at HUP.  Mom, Dad and Aunt Connie went down to meet him.  Max and I went to see his doctor for his cold symptoms.  He was headed in the direction of bronchitis.  We wanted him to be well to be able to visit his Dad.  After the doctor visit, I took him to his mom's house again.  I wanted to prevent all of us from getting sick and wanted him to be able to escape the sadness for a while.  At his mom's house, all was still normal there.

Mom said that the Amtrack building was all lite up in green for the holiday.  It was really hard to see everyone walking around like zombies.  We still carried a speck of hope that carried us through but the reality that Clayton might not make it was deeply setting into our hearts.  

Can this really be good-bye?

The doctors' news was bleak.  Clayton had been put into a medicated coma to give his brain much needed rest.  His body was jerking and convulsing from a confused nervous system and seizure activity.  The fear and worry was palpable as you entered the room.  No one wanted to say what we were all thinking, Clayton probably wouldn't recover from this one.  We had been through so many crises with him that we always expect the guy who was "tough as nails" to pull through.  How could this be happening?

We decided that family needed to be notified.  Our large family trickled into the chapel, a few at a time.  Grandmom closed the flower shop to head to the hospital.  We all prayed together and cried together.  Could this really be good-bye?  Will we ever see those big, dark brown eyes open, again.  We all prayed for a miracle, for hope, for strength and for guidance.  Little did we know that as hard as those moments were, it would get worse.

Early morning hours of March 17th

Around 4:15 am, Clayton emerged from the bathroom.  He had needed help and was calling for it.  Dad saw that he was short of breathe and got Mom.  After getting dressed, they rushed to Grandview Hospital.  Clayton hurried to the car and waited for Mom to come drive.  While in the car, he lost consciousness due to his difficulty breathing.  Pink foam started to come from his mouth. Dad stayed behind to call 911 and have them ready for their arrival at the hospital.  Unfortunately, those moments have been analyzed, scrutinized and relived many times in thinking of what might have been done better by all three.  Prayers and time have helped to ease the burden of guilt for all.  Sometimes, it would be nice if we had a crystal ball and knew what would happen to prevent it.  

Clayton was quickly rushed into the hospital.  They were able to revive him but it took at least 7 minutes.  Added that to the unknown amount of time that he was unconscious and he had lost oxygen to his brain for 10 to 15 minutes.  Not a good sign for a full recovery.  Mom called Mandy at 6am.  Ironically, she had stayed up all night to get work done.  She felt compelled to complete several projects and wasn't sure why they had to be done before the next day.  When the phone rang, she knew why she stayed up all night.  She made arrangements for childcare and missing work then headed for Grandview.

When she arrived, her parents were meeting with the doctors. As the world started, its usual activities, she received several calls from family.  She broke the grim news and family members came to the hospital, one by one.  Aunt Connie was one of the first.  Always a blessing with her nursing skills and connections within the medical community, she gave much comfort to a family that was fearing the worst.

Evening of March 16th

Clayton wasn't feeling well.  He decided to go shower to help him feel better. Mom checked on him to see if he was ok.  She thought that he might need some help.  He had really been pushing himself for the past few weeks to be as active as possible.  This left him really tired at night.  He said that he had finished showering and was going to get dressed in a minute.  Clayton often spends a lot of time laying on the hard tile floor with the heater on in the bathroom.  The heat that the tile absorbs and its hard surface helps his back.  So, it was not unusual for the family to go to bed with Clayton sleeping in the bathroom.  Earlier in the day, he had said that he didn't feel well.  He said that he was really thirsty and that he had probably drank too much.  Dialysis in the morning would help him.